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Old 06-08-2008, 11:28 PM   #1
Joanne S
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Hello all - remember me?

Hi It's been several weeks since I've been online. Some of you already know---I ended up in the hospital for 10 days due to a terrible (staph) infection --- just a little something that topped off my capsular contracture complication.

Although I had immediate surgery and had to get my gel implants removed, I continued to have a low blood pressure and run a high fever for several days.
Once I was released from the hospital, I continued on antibiotic IVs for four additional weeks. Having this setback and losing our three HER2 sisters in May along with losing my special HER2 chemo sister in May proved to be just tooooo overwhelming .

Fortunately, I have finished getting IVs, and finally -I am now feeling better.

All of you, my HER2 brothers and sisters, have been in my prayers!

Hugs,
Joanne
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



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Old 06-09-2008, 04:22 AM   #2
dhealey
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Location: moved to Lancaster, Pa in June, 2010
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Jonanne, So sorry for your recent hospitalization. Glad your feeling better. It is so hard when we lose one of our her2 sisters or brothers, it is so close to our own disease. When this happens it makes me all the more determined to keep fighting and keep doing things to insure they keep doing more research to bring this disease to an end. May god bless you with better days ahead.
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Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 06-09-2008, 06:23 AM   #3
PinkGirl
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Thumbs up

Hi Joanne
Welcome back!!! You were missed.

So sorry about the ordeal you have been through.
That really sounds awful - I'm so sorry that happened
to you. But now I'm happy that you are on the mend
and feel well enough to post.

Take good care and please keep us updated.
__________________
PinkGirl

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 06-09-2008, 10:05 AM   #4
StephN
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Dear Joanne -
Very glad to hear from you!

I WAS thinking about you and hoping you were successfully battling that blankety-blank infection. Yes, May was a hard month for many here. Sorry you had more to top it off.

This should be the beginning of a turnaround for you and some good months to come. Keep the fighting spirit up.
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"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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Old 06-09-2008, 10:26 AM   #5
swimangel72
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Joanne I'm so sorry to hear about your staph infection! I had one too after my Diep surgery back in early March and was on the heavy-duty antibiotics. It takes a big toll on your body - and you must feel so disappointed about your implants. I'm happy you're feeling better - and hope that the summer will make you feel stronger every day!
__________________
xxoo
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 06-09-2008, 10:43 AM   #6
Paty
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Great to see you back Joanne, I hope you have a speedy recovery. Lots of hugs.

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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Old 06-09-2008, 11:34 AM   #7
sarah
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Welcome back Joanne. Hope the sunshine and longer days lift your spirits.
hugs and love
sarah
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Old 06-09-2008, 02:48 PM   #8
Mary Anne in TX
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Hi Joanne! So glad you're better and back. The loss of our incredible warrior sisters was and is overwhelming. We all process those losses in different ways, but feel them strongly. Glad you are on the mend and have checked in to let us know what's up with you! Here's to better days and longer life! 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 06-09-2008, 06:43 PM   #9
Mary Jo
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Hi Joanne,

So, so happy to see you back among us and I'm sorry for all that you've been through. The infection and losing your implants is surely bad enough but having to say "good bye" to several sisters surely had to be more than you felt you could possibly deal with.

I'm thankful you were able to get through it all and that you are feeling better. I'm happy you are back here with us so we can love and support you too.

Wlecome back "sister" and I pray God's strength, peace and joy surround 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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Old 06-09-2008, 08:56 PM   #10
Joan M
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Hi Joanne,

It's so good to hear from you. I really missed your great posts. I'm sorry that you were in the hospital and developed an infection. I'm glad that you're feeling better. Wishing you brighter days.

Best, 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 06-10-2008, 09:35 AM   #11
Jackie07
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Welcome back! So glad to see those cute little figure jumping on your message again. More important, glad to know you are well and full of energy.
__________________
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

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Old 06-10-2008, 11:56 AM   #12
tricia keegan
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Welcome back Joanne, you were missed and I'm glad to hear you're feeling lots better
__________________
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 06-10-2008, 05:29 PM   #13
WomanofSteel
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Glad to see you are back and feeling well again. I always like your colorful posts with the little icons and such.
__________________
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

Last edited by WomanofSteel; 06-10-2008 at 05:31 PM.. Reason: mistake in word
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Old 06-12-2008, 09:34 PM   #14
sassy
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Glad to see you back, and so sorry you had to deal with a staph infection. I had one at mast site a year after surgery, and it was pretty tough. It has caused a lot of scar tissue, and other problems.

Hope your recovery will continue, and you will gain strength daily.
__________________
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 06-12-2008, 09:58 PM   #15
kcherub
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Joanne,

Glad to see you again, and happy you are on the mend!

Take care,
__________________
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 06-13-2008, 06:29 AM   #16
Sheila
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Joanne
I am never going in for my capsular contractures...you have convinced me...so glad you are on the mend and back with us...we missed you!!!!
__________________
"Be kinder than necessary, for everyone you meet
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 06-14-2008, 01:30 PM   #17
Joanne S
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Posts: 592
You are so appreciated.
Thank you all very much for
your kind words and thoughts!


You guys mean so much to me!

Jo

I keep all of you in my daily prayers for continued
improvement and wellness!
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



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Old 06-16-2008, 12:56 AM   #18
harrie
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/welcome back!

Joanne, welcome back! Sounds like you have been thru quite an ordeal there. So glad to hear you are doing much better.
How is the post-mastectomy pain? Has it cleared up totally?
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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Old 06-16-2008, 08:54 AM   #19
Patb
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So sorry to hear of all your troubles. Wishing you
healing thoughts and sunny skies from now on.
Take care
patb
__________________
patb

Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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Old 06-16-2008, 09:10 AM   #20
PinkGirl
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Smile

Hi Joanne
I hope you're feeling better with each new day.
We've missed your posts and hopefully you will
return to being one of the "regulars" soon.

Stay well.
__________________
PinkGirl

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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