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03-01-2009, 07:21 AM
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#21
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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, 07:52 AM
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#22
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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, 08:07 AM
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#23
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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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#24
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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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#25
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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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#26
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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, 10:50 AM
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#27
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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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#28
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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, 11:00 AM
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#29
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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, 11:08 AM
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#30
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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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#31
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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, 12:40 PM
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#32
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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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#33
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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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03-01-2009, 01:00 PM
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#34
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Senior Member
Join Date: May 2006
Posts: 46
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I am so very sorry to read this news, Eric. This is heartbreaking. My heart goes out to you and your family.
-Gabrielle
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03-01-2009, 01:44 PM
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#35
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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I am praying for that miracle for your family. I do believe in them. Lifting all of you up in prayer and asking God to bless your days and navigate your interactions with the doctors.
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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03-01-2009, 02:37 PM
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#36
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Senior Member
Join Date: Sep 2005
Posts: 556
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Eric,
I am so mad and sad at the news. I have known you and Caryn since I joined the board. Please don't give up and try Navlbine or Gemgar with proven result for Her2 disease.
Please know that miracles are possible. I have heard many people who were given two weeks to live for a long time once they start a targeted treatment. Please don't loose hope and fight.
Thinking of you and Caryn and sending all the positive thoughts and prayers you need.
Please keep us posted.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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03-01-2009, 02:38 PM
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#37
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Senior Member
Join Date: Dec 2006
Location: Massillon, Ohio
Posts: 247
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Many prayers are coming your families way. Please note that all these posts are from people who support you and your family. We are all in this special club and we fight together; as well as with our family and friends too.
__________________
Laurie
Diagonsed 8/10/06 (found own lump)at 35
Her 2 +++, er-/pr-
4 A/C 8-29-06 to 11-06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
12 Taxol 12/18/06-03/06/07
Herceptin 12/18/06- 12/11/2007 done!!! yeah!!!
33 rads started 3/22/07, done!! yeah!! 5/07/07
Lymphedema diagonsed 2/1/07
BRCA1/BRCA2 negative
port out 1/10/08
pregnant after 6 yeas of trying- due mid feb.
Ryder David Kessel Hunter born feb.6th 2009
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03-01-2009, 02:39 PM
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#38
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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So very sorry to hear this news. I am praying hard that God will find a way and save caryn. Please God....
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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03-01-2009, 03:08 PM
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#39
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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I am adding my prayers to those of my sisters. Every moment is precious. I hope you find a new treatment or drug combo that works for Caryn.
__________________
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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03-01-2009, 03:19 PM
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#40
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Dear Eric,
I wanted to let you know how much I respect you for the ongoing involvement and support you've provided Caryn and all of us on this site. I know that you are a fantastic dad and with your support, your children will be fine. You will have an opportunity to witness what a fantastic job you and Caryn have done.
BUT......to the extent Caryn is up for it...keep on swinging. What about some of the recent vaccine trials. Would one of this be an option to boost Caryn's immune system? Was a surgical procedure ruled out? Chemo embolization directly to the liver?
Warmest wishes of peace and gratitude to you and your family.
Love...Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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