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03-01-2009, 07:52 AM
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#1
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Eric
My heart is heavy as I read this news, as I have followed Caryn's fight and your unending support for a long time. Prayers are everywhere for Caryn, You and your children...may she get that miracle that you all so deserve...you are in my thoughts
__________________
"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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03-01-2009, 10:50 AM
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#2
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Eric,
We are profoundly sorry to hear about Caryn. Please let me know if there is anything that we can do.
Warmest Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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03-01-2009, 10:58 AM
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#3
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Eric, I am so terribly sorry to hear your news. You and your family are in my thoughts.
Hopeful
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03-01-2009, 11:08 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Thinking of you!!!
Hi Eric,
This is certainly very sad news. I have followed all your posts and have been so impressed how you have tenaciously fought to find the best treatments for Caryn. As a teacher I have had children in my classroom who have lost their parents to cancer and to other illnesses. They remember their parents and speak of their memories. They remain an important part of their lives. One parent compiled a book of her favorite recipes for her daughter. Please assure Caryn that if nothing more medically can be done at this time, that her children will survive and will be OK. Caryn will continue to be a part of them for the rest of their lives. My grandmother died of cancer when I was three. She crochet a booty for my doll the day that she died. My mother recently just sent it to me. I have memories of my grandmother and will never forget her.
That being said, I my thoughts remain with you and your family, and I sincerely hope that a treatment will be found to give her more time.
I wish the best for you and your family and thank you for keeping us informed. Of course we all care for you and do not like to hear this news. However, we want to be here to support you.
Best regards,
Barbara
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03-01-2009, 12:27 PM
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#5
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Senior Member
Join Date: Jan 2008
Location: Oregon City
Posts: 856
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Eric:
I am so sorry to hear about Caryn and the devastating effects cancer will have on her life and the lives of everyone in your family.
Eric, please know that you and your family are not alone. We will pray for you and your entire family.
Lee
__________________
This happened to Colleen:
Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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03-01-2009, 03:44 PM
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#6
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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Dear Eric and Caryn,
You are in my prayers, with all of us praying and hoping something just has to happen that brings hope and light into your lives. Please know that you and your family are part of our family too - we are hoping and praying right along with you. Miracles do happen!
Love, Donna
__________________
Donna in the Sierra Foothills of California
Diagnosed 6/7/06 invasive ductal carcinoma/ductal carcinoma in situ
Lumpectomy 6/21/06
Pathology: Er 99% Pr 10% Her2/neu 3+
DNA Index 1.0
S-Phase 3/High
Primary Tumor 2.4 cm Sentinel Node Tumor 2.1cm
A/C/T+ Herceptin + rads + Arimidex
stopped Herceptin after 7 mos. due to low MUGA
Surgery for thickened uterine tissue May 2008 - conclusion: side effect of Arimidex
Switched from Arimidex to Femara - joint/tendon problems significantly better!
2 year mark Pet scan and Echo shows all clear!
5 year mammogram with ultrasound shows no sign of cancer - yay!
11 years, 11 months new breast cancer - found lump
Mastectomy 4/30/2018
Pathology: Er99%, PR 28%, Her2 negative! (new type)
Faslodex
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03-02-2009, 04:35 AM
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#7
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Senior Member
Join Date: May 2008
Posts: 28
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Eric, I'm sorry for your news. My prayers are with Caryn, you and your family.
__________________
Found lump 3/07 at age 44
Surgery: 7/07 rt-MRM, lt-Simple Mast. w/ immediate implants using Alloderm
Tumor: 3 cm., grad III, poorly diff., Stage IIA, IDC, ER/PR-, HER2+++(FISH 3.2) 0/14 nodes
Chemo 8/07-3/08 AC x 6 DD, Taxotere x 12
Herceptin 3/08 weekly for 1 year-done 2/17/09!!!!
Brca 2 +, complete hyst 6/15/2009
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03-02-2009, 07:05 AM
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#8
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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Eric,
Please know you, Caryn and your family are in my thoughts and prayers.
Maria
__________________
--------------
Dx'd 8/04 at 41
Stage 1 for some onc's; Stage II for others (if you add up the sizes of all tumors).
Infiltrating DCIS
HER2+, ER+10% & PR-
.9cm tumor not visible on mammo, but palpable; visible on ultrasound
Lumpectomy/ clear margins, no nodes
Had Breast MRI after lumpectomy that revealed two more tumors in same quadrant(.4cm and 1.6cm) that were not visible on either mammo or ultrasound.
Re-excision
DD AC+T; Herceptin one year
Rads
NED/Taking Tamoxifen reluctantly
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03-02-2009, 07:06 AM
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#9
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Eric and Caryn,
Add me to the list of many praying for Caryn, you and your family. Hoping today you will get some direction in what way to go for the next treatment.
Donna
__________________
Donna
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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03-01-2009, 05:31 PM
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#10
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Senior Member
Join Date: Nov 2004
Posts: 190
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I'm praying for you!
__________________
8/98 dx right breast
5/2003 tram flap right breast
8/2004 dx new primary left breast with inflammatory bc
er/pr-, her2neu+++
8/19 taxotere and herceptin
1/15/2005 Navelbine/Herceptin
4/2005 radiation and Herceptin
5/15/2005 Herceptin alone
2/12/2008 skin biopsy positive
2/14/2008 met to sternum, possibly right breast
2/27/08 Start omitarg, herceptin, taxotere trial
3/17/08 Kicked off trial because I started too close to my last herceptin
3/19 start tykerb xeloda
Right breast confirmed met
5/15/08 skin mets gone, no hypermetabolic activity in breast, sternum healing
8/24/08 scans still look good. sternum still active with scarring. No evidence of progression
10/08 Progression in sternum
12/08 Start TDM1 trial
1/09 Scans show stable
12/09 1 year on TDM1 still stable
10/10 progression in chest and liver
11/10 false positive of liver mets; tykerb and herceptin
4/11 Tykerb/Herceptin/Xgeva
4/11 Rads to Sternum
5/12/12 NED Herceptin/Zometa
3/16/19 still NED Herceptin/Zometa very 6months
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03-02-2009, 07:36 AM
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#11
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Senior Member
Join Date: Nov 2005
Posts: 943
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"If there's a God - God Bless You ALL!"-
Yes, Eric, there is a God and it is hard to see the master's plan sometimes, especially in hard times. I am sending prayers your way that somehow your sweet family will be blessed in this crisis and for miraculous healing.
__________________
Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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03-01-2009, 07:21 AM
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#12
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Senior Member
Join Date: Oct 2005
Posts: 823
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Eric many, many prayers out to Caryn, you and your family. I'm at loss for words to say. Just know that I am praying for her.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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03-01-2009, 03:47 PM
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#13
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Eric, I am so sorry to hear about Caryn. Please know that you are all 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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03-01-2009, 08:07 AM
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#14
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Eric,
I'm very upset about Caryn. Please let her know she is in my prayers that the oncs come up with another treatment. It's been a long haul, but best to keep fighting this if there's another treatment option. I'm sorry for all that you've been through, your children too.
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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03-01-2009, 08:29 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Eric,
This is devastating news. Sloan Kettering is a great hospital and I hope they come up with a good treatment for Caryn.
I wonder if a website such as www.bcmets.org would have anything helpful to suggest.
Prayers and postive thoughts go out to all of you
big hug and love
sarah |
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03-01-2009, 09:23 AM
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#16
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Go everywhere you can. Sometimes the big cancer centers only go by the books and smaller places try new or even outdated treatments that haven't been tried.
I am thinking about Caryn, you and your children.
__________________
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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03-01-2009, 10:23 AM
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#17
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Dear Eric and Caryn, I have just seen your post, and my heart is aching for you and your family. I am praying fervently that you will feel God's arms around you. We will pray for a miracle for you, and we are all sending love and prayers. Tricia
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03-01-2009, 11:00 AM
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#18
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Eric,
My prayers are with Caryn, you and your children. Hold on to hope and God.
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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03-01-2009, 12:40 PM
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#19
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Senior Member
Join Date: Apr 2007
Location: Mississippi
Posts: 600
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I am so sorry. It is bad enough when you are older, as I am. You and your family will be in my thoughts. I hope so much that you can find another treatment for Caryn. While you are looking, please take the time to find your way through this. There are several suggestions in the following site that might help if you do need them.
http://www.cancersupportivecare.com/terminal.html
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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03-01-2009, 12:55 PM
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#20
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Senior Member
Join Date: Jul 2006
Posts: 869
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Everyone has been so eloquent in their feelings. My heart feels heavy right now and I will pray for your entire family. I hope a miracle awaits for you and yours. Ceesun
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