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09-09-2008, 01:27 PM
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#1
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Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
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Getting Off Herceptin
To all my HER2 Sisters,
After 9 years of treatment and endless ECHO-cardiograms, I made a personal decision to discontinue Herceptin last February.
Although my heart was doing well, my ELVF was slowly declining. Initially it was measured at 70%, the last one showed it at 50-55%. I discussed this with Dr. Slamon at the spring AACR meeting. He supported my decision with the provision that I be closely monitored. I mentioned that I had been using the HER2 Serum test and that my oncologist would continue to include that test along with other standard markers. Dr. Slamon was completely comfortable with my plan. I will also be measured using the CEA tumor markers as it was only the CEA test that had indicated my recurrence in 1999. Even then it was only slightly elevated @ 2.59
My HER2 Serum test has always been in the 5.2 – 7.8 range which is well within the normal range. I will continue to be monitored with MRI brain scans.
I have been feeling very well lately. My vision has markedly improved after having cataract surgery last year on both eyes and I have returned to driving again.
I do not recommend discontinuing Herceptin to everyone. When I was first tested for the HER2 gene in 1999, the pathology report stated that I was strongly positive by IHC 3+++ and also stated “strongly 3+”. My initial response to Herceptin was nothing less than a miracle. I personally know of only few others who were as highly receptive as myself.
Hugs
Christine
__________________
1990, July DX 1.1cm er-, pr-
Lumpectomy, 5U4, radiation
1999, June mets to chest and brain
HER2 3+++, er- pr-
AC, Taxol, Herceptin, Gamma Knife (3 treatments) WBR
NED July 2001
December 2001 - Founded HER2 Support Group
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09-09-2008, 02:26 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Thanks Christine! Helps.
__________________
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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09-09-2008, 04:49 PM
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#3
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Thanks for the info Christine.
Amelia
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09-09-2008, 05:20 PM
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#4
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Christine,
Congratulations on your decision. You deserve a break you have truly earned. Your plan for following up sounds like a good one. I'm praying for your continued success with fighting this disease.
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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09-09-2008, 06:32 PM
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#5
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Senior Member
Join Date: Jul 2006
Posts: 59
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Congratulations on being not only a trailblazer but a hero among us!
Best wishes for continued good health,Christine!
Marcia
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09-09-2008, 06:36 PM
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#6
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Good luck Christine on your brave, and well-informed decision. I am so happy to hear that you are feeling well.
I second what Marcia said - you are a trailblazer and hero among us.
God bless you and Joe.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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09-09-2008, 07:57 PM
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#7
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Senior Member
Join Date: Jul 2006
Posts: 869
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Congrats Christine, but what is the her2 serum test and is it routinely given by oncologists? Ceesun
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09-09-2008, 09:07 PM
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#8
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Senior Member
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
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Good for you on making a well informed decision for yourself. Thank you for providing such a wonderful and informative group for us.
__________________
-Sarah-
Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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09-09-2008, 09:10 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Christine, I'm glad things are continuing to go well for you and that you are feeling good. It was a gutsy move to cut the cord on the Herceptin - just further proof that you are a gutsy lady!
Take care
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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09-10-2008, 03:41 AM
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#10
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Senior Member
Join Date: Jan 2007
Posts: 368
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Christine, you and Andi are both brave ladies. I applaud your decisions to get off Herceptin. It's a big move. I wish the best for both of you.
p.s. My path report also indicated "strongly positive" Her2 +++3.
I consider myself extremely lucky to get Herceptin from the start.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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09-10-2008, 04:20 AM
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#11
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Congratulations Christine in you decision. You are truly an inspiration to the rest of us. Enjoy your well earned freedom. God Bless.
__________________
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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09-10-2008, 05:58 AM
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#12
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Congratulations! 1990 was the year when I had my first brain (tumor) surgery. And the recurrence has been well controlled by the Gamma knife radiosurgery in 2001.
Your MUGA scores are amazing! Guess you have had a good heart to begin with.
And you look so good in your picture!
__________________
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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09-10-2008, 08:25 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: OH
Posts: 385
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Well Christine
that sounds like a plan! You truly are the poster person for Herceptin and an example of the good it does for so many. You made a sound decision and it's good to hear your vision is better and that you're driving again. I wish you, and Joe, the best!
__________________
Diagnosed 4/03/03, age 50
3.5 cm, 0/19 positive nodes
Stage IIA
Her2++, ER & PR++
RB Mastectomy, 4 AC,
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09-10-2008, 10:48 AM
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#14
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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One of her secrets - WALKING!
Glad to hear that you are still holding your own and so well!
What Christine failed to mention is that she is a dedicated WALKER. She joined a walking group and has a great trail near her home. I think you said you walk 3 miles at a time? Or is it ?? miles, 3 days per week?
Anyway, as they say: "The proof is in the pudding."
I need to follow this example myself to try and get my MUGA back up! 
__________________
"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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09-10-2008, 11:38 AM
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#15
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Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
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Lung Abalation information
Joan
I am very interested to know how and where the radioabilation produre was done ; and also learn about it's success. Thanks for your reply.
Quote....If we stop learning we cease to exist...Christine
__________________
1990, July DX 1.1cm er-, pr-
Lumpectomy, 5U4, radiation
1999, June mets to chest and brain
HER2 3+++, er- pr-
AC, Taxol, Herceptin, Gamma Knife (3 treatments) WBR
NED July 2001
December 2001 - Founded HER2 Support Group
Last edited by Christine; 09-10-2008 at 12:34 PM..
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09-10-2008, 12:24 PM
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#16
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Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
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her2 serum test
Hi Leesun
The HER2 serum test has been FDA approved for metastatic breast cancer for the past few years. I feel it is a great monitor test that for her2neu overexpreassers. With a simple blood draw, the laB,Quest) has the assay test that was formulated by Bayer.
It is a very sensitive test that can show if your here2 cancer cells are progressing or decreasing. A baseline test comes first, then every 2-3 months to see if your chemo has worked or to see if they are progressing. Iam no longer taking herceptin and will be monitor any progression withis test. It has been on target forme over the past 2years. Normal goes fom 4 to 15. My average with hrceptin was arround 5 to 7. my recent test results w/o herceptin is 7.8. Iam having this test every 2-3 months as planned. I also take Cea tumor marker test that helped me in 1999 DX my relapse.
Ask your onc if he is intersted in this test for her2 cancer patients. Ifind it to work for me, while other tm tests sre and invalid, except for the cea tm test that has been my backup. Sending you well wishes, Hugs Christine
__________________
1990, July DX 1.1cm er-, pr-
Lumpectomy, 5U4, radiation
1999, June mets to chest and brain
HER2 3+++, er- pr-
AC, Taxol, Herceptin, Gamma Knife (3 treatments) WBR
NED July 2001
December 2001 - Founded HER2 Support Group
Last edited by Christine; 09-10-2008 at 12:34 PM..
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09-10-2008, 12:35 PM
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#17
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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You are my most profound inspiration, Christine. I will follow your decision and progress with hope and pure optimism!
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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10-06-2008, 01:08 PM
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#18
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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just refreshing the post
__________________
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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10-06-2008, 02:15 PM
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#19
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Thanks Joe and I just wanted to say that you, Christine, are a breath of fresh air. So, so happy you are doing so well.
Hugs and Many Blessings,
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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10-06-2008, 08:57 PM
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#20
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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Thank you Christine. You are so much of an inspiration to all of us!
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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