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Old 02-16-2008, 05:50 PM   #1
Stephanie
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Location: San Marcos, CA
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My mother

I post here occasionally, but have read every day for the past five years in order to research my mother's HER2+ cancer.

After a very long journey with the disease, my mother passed away on Friday, Feb. 15.

I am still in active treatment for my HER2 neg bc, but when that ends, it will almost be a bit of culture shock for me. The past five and a half years have been consumed with first my mother's cancer, then as of last June, mine as well as hers. Our lives have revolved around the cancer center, and now that will all be stopping. It's a strange feeling.

I wanted to publicly thank Joe and Christine for their tireless dedication as bc advocates. Everything I learned about HER2 bc I learned from this site, and I am very grateful for that.
__________________
Mother/daughter bc patients (should have signed up for spa treatments instead of chemo! Who knew?)

Mom:

dx 2002 age 62
Stage IIIB, triple positive
FACx6, tamoxifen
2004 Stage IV, started Herceptin
mets to pleura, lungs, bone
tried Arimedex, Faslodex, Zometa, Navelbine, Taxol, Taxotere, Gemzar, Carboplatin, Abraxane, Xeloda
June 2007 new mets to nodes and pericardiam
Switched from Xeloda/Herceptin to Xeloda/Tykerb
September 2007 Failed X/T. Switched back to Xeloda/Herceptin, added Gemzar
Jan 2008 Taxol/Tykerb
Feb 2008 Tykerb as a single agent

Me:

dx 2007 age 38
Stage IIA pleomorphic ILC ER/PR + HER2 -
FACx6, tamoxifen
Mom to 2, ages 6 and 9

Trying to find a new hobby besides going to the cancer center.
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Old 02-16-2008, 05:57 PM   #2
sassy
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Stephanie,

When my own mother passed away from Alzhiemers, it was a strange time. That which I had most feared, my mother's death, had happened, but I was finally able to rejoice in her life, rather than worry about what was to come.

I hope that you will find comfort and peace, and I extend to you my sympathy, understanding, and hope for your future as well.
__________________
Rhonda (Sassy)
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 02-16-2008, 06:21 PM   #3
harrie
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Stephanie,
My sincerest sympathy in the loss of our mother. My mother passed away at the age of 60 maybe 12 yrs ago.
Have you considered genetic counselling?
Harrie
__________________
*** 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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Old 02-16-2008, 06:31 PM   #4
Vanessa
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My condolences on the loss of your mother. I will be keeping you and your family in my prayers.
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Old 02-16-2008, 08:14 PM   #5
kcherub
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Unhappy

Stephanie,

I am so sorry for your loss. I think I have seen your "signature" on another support site, but I am glad that this group was helpful to you, and your mother.

I will be thinking of you...
__________________
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 02-16-2008, 08:41 PM   #6
Stephanie
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Thank you, ladies.

Maryanne--yes, I was BRCA tested, but it was negative. My mom's bc was most likely random. However, my dad was a Ashkenazi Jew who died of pancreatic cancer, so if I had tested positive, it probably would've been from his side.

Krista--I'm very active over on bc.org--maybe that's where you're "seen" me.
__________________
Mother/daughter bc patients (should have signed up for spa treatments instead of chemo! Who knew?)

Mom:

dx 2002 age 62
Stage IIIB, triple positive
FACx6, tamoxifen
2004 Stage IV, started Herceptin
mets to pleura, lungs, bone
tried Arimedex, Faslodex, Zometa, Navelbine, Taxol, Taxotere, Gemzar, Carboplatin, Abraxane, Xeloda
June 2007 new mets to nodes and pericardiam
Switched from Xeloda/Herceptin to Xeloda/Tykerb
September 2007 Failed X/T. Switched back to Xeloda/Herceptin, added Gemzar
Jan 2008 Taxol/Tykerb
Feb 2008 Tykerb as a single agent

Me:

dx 2007 age 38
Stage IIA pleomorphic ILC ER/PR + HER2 -
FACx6, tamoxifen
Mom to 2, ages 6 and 9

Trying to find a new hobby besides going to the cancer center.
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Old 02-16-2008, 09:27 PM   #7
Faith in Him
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Stephanie,

I am so sorry for the loss of your mother. Please know that I will be praying for you.

Tonya
__________________
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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Old 02-16-2008, 09:37 PM   #8
goops
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I am so sorry for your loss - please except my condolences and know that you will be in my prayers.
__________________
May 2007 - Stage 3A, 12 positive nodes, her2 positive
July 2008 - Stage 4 - Liver Mets

Help my city grow:

http://goopsville.myminicity.com/ind/
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Old 02-16-2008, 09:52 PM   #9
mslinda
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So so very sorry for the loss of your mother, Stephanie. It is so hard loosing our parents. My prayers for you and your family are for peace and comfort at this time of your life.
Linda
__________________
Diagnosed 12/23/04
Biopsy 12/28/04
Lumpectomy 1/04/05
IDC, ER-PR-, HER2Neu+++
7mm tumor, Stage 1, Grade 3
6 CAF's
38 Rads
Finished 10/05

"Worry looks around. Sorry looks back. Faith looks up."
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Old 02-17-2008, 12:21 AM   #10
Bill
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Unhappy

Steph, I'm so sorry to hear of the loss of your mother. Please know that you are in our thoughts and prayers. Love, Bill
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Old 02-17-2008, 06:30 AM   #11
Mary Anne in TX
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Stephanie, I'm so sorry to hear of the loss of your mom. ma
__________________
MA in TX.
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 02-17-2008, 06:42 AM   #12
Joan M
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Stephanie, I'm sorry to hear that you lost your mom. Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 02-17-2008, 08:07 AM   #13
charlotte
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I am also sorry to hear of the loss of your mother..You will be in my prayers and thoughts .
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Old 02-17-2008, 12:04 PM   #14
Rendi69CA
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Unhappy

I am so sorry.
__________________
04/97- breast bx. diagnosis breast cancer.
05/97- radical mastectomy; 5cm tumor & 11 lymph nodes.
10/97- City of Hope, high dose chemotherapy.
11/97- 36 radiation therapy.
01/98- NED; tamoxifen.
02/02- breast reconstruction.
08/04- recurrence; mets to rt lung; thoracentesis; femara.
09/04- thoracentesis; ER/PR +, Her2+++.
10/04- total abdominal hysterectomy.
02/06- mets to 9th rib; monthly zometa; arimidex.
06/06- medi port insert; weekly herceptin.
10/06- 3 weeks herceptin treatment.
02/07- mets to liver; arimidex
11/07-liver clear
02/08-chemo taxol/herceptin weekly treatment
12/08-taxol not working
01/09-navelbine/herceptin weelky
03/09-navelbine not working
04/09-xeloda/tykerb
09/09-30 radation to neck; xeloda/tykerb not working
11/09-Gemzar/herceptin weekly
04/10-tykerb/herceptin weekly
06/10-cancer spread to left lung;stop treatment; tap
07/10-right lung collasps; TDM1
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Old 02-17-2008, 03:30 PM   #15
Soccermom
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Dear Stephanie,
My sincerest sympathies on your dear Moms passing.
I too lost my Mom to BC during my treatment for same.

In sisterhood,Marcia
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Old 02-17-2008, 03:39 PM   #16
Jackie07
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I am sorry for your Mother's passing. Please know that you and your family are in our prayers.
__________________
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
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Old 02-17-2008, 11:26 PM   #17
Chelee
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Stephanie, Please accept my sincerest condolences on the loss of your dear Mother. I just lost my Mother this last August to advanced lung cancer. So my heart really goes out to you at such a difficult time. Please remember that her spirit and love will always live on in you. I will be keeping you in my thoughts and prayers.

Sincerely,

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 02-18-2008, 03:23 AM   #18
Joanne S
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Steph,

Your mother is now at peace. May memories of the precious times shared with your mom overshadow your thoughts of her difficult journey and give you solace and peace.

My heartfelt sympathy for your sorrow, I will pray for improvement in your health and well-being. Take care.

Joanne

I know how you feel as I lost my mom to breast cancer in 1996.
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Old 02-18-2008, 05:06 AM   #19
WomanofSteel
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Posts: 889
I am sincerely sorry for your loss. I will keep you in my prayers.
__________________
dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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Old 02-18-2008, 07:38 AM   #20
tousled1
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Please accept my deepest sympathy on the loss of your mother. It's very difficult when we lose someone we love.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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