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05-05-2007, 10:26 AM
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#1
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Dear Barbara,
Thank You, Thank You, Thank You!
Kim in CA
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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05-06-2007, 06:19 PM
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#2
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Senior Member
Join Date: Mar 2006
Posts: 78
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Hi Barbara,
Thank you so much for sharing your appt with us. It was very informative & encouraging, and will help me put things in proper perspective.
I especially liked Dr. Pegram's personal message to you, and as a result of your generosity, a message for all of us. Dr. Pegram: "You can sleep at night that you've done everything you could possibly do. And after you do everything, then you can stop worrying because at this point it's not going to be up for you to decide. Either you're going to be cured or not...prepare for both...But you have to be prepared for the fact that you might be disease free forever. You know, that's a good possibility."
WOW! It's just what I needed to hear!!
__________________
G. Ann
DX 2/04, mastectomy, 2.5 cm tumor, grade 3
Her 2 positive, 60%, 3+/strong, ER/PR-
Stage 2, 0/18 nodes
TX 4 AC (no taxanes, no radiation)
Hysterectomy 10/04
Began Herceptin 1/06, finished 1/07
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02-16-2008, 09:48 PM
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#3
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Senior Member
Join Date: Jan 2008
Posts: 305
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Thanks for taking the time to write all that down - it is very interesting as well as encouraging.
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02-17-2008, 07:11 AM
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#4
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Barbara, Very awesome! I'm impressed with how organized you were. Thanks for taking the effort to transcript your meeting with Dr. Pegram. 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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02-17-2008, 07:56 AM
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#5
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Senior Member
Join Date: Nov 2007
Location: We presently live 1 1/2 hrs fr a city. in manitoba canada
Posts: 148
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dearest barbra
what can i say to you that you have not already heared from these great friends. So from a newbie this was a true gift to me. I often feel stuck......downweighted.(in the not knowing)..i will be starting herceptin Tues, and your wonderful information has lifted my spirit. This was just what many of us need to hear. Validation!!!
thank you for extending this to all of us
suzanne
__________________
suzannne
dx aug10/07
3 pos high, grade 3
tumor 2.5cm multifoc
bil mast recon sept 24/07
neg snb/neg lymph vascular
clear marg
chemo a/cx 4 rds
tomoxifan started feb11/08
herceptin to begin soon
herceptin completed feb/09
aromacin(A.I)for as long as i can
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02-17-2008, 09:20 AM
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#6
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Senior Member
Join Date: Dec 2005
Location: Michigan
Posts: 230
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Everyone else has said but again A GREAT BIG THANK YOU 
__________________
Mary
Diagnosed 11/04 @39yrs. young
Stage IIB
2.5 cm, ER/PR- Her+++, grade 3
Partial Mast., 1/3 pos. node
1/05 full node dissection
4 A/C 4 Taxol DD, Herceptin 1 yr.
30X rads.
BRCA Negative
NED
Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all -Emily Dickinson
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