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05-28-2010, 07:30 PM
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#1
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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5 years and the journey has been anything but dull
Hello her2 family.....
It's been awhile but thought I should pop in to give you a little update and the happenings in my life.
I will celebrate my 5 year cancerversary June 24, 2010. I can hardly believe it's been 5 years but then again, it feels like all that I went through 5 years ago never really happened to me. That sounds odd I know....but it's how I feel. It seems like it happened to somewhen else and not to me. However, all that being said.....the blessings that followed truly happened to me and life has been anything BUT dull.
In 8 days me and 40 others are traveling to Nairobi and Malindi, Kenya to do mission work. We will be visiting an orphanage....doing some light construction and coordinating and having Vacation Bible School for approximately 450 children. Also while their I will get to meet the little girl me and my husband sponsor through Compassion International. Two days before we are to leave to come back to the USA we will be worshiping with 3 groups of different Kenyan people. I was asked to give a devotion/talk on a verse of scripture that had meaning to me. At first I felt incredibly intimidated by that "calling" but then realized that Romans 8:28 needed to get out. It's my verse....it's the verse I repeated (prayed) almost daily during my diagnosis, treatment and learning to live in my "new normal." That verse promises ...." for we know that in all things God works for good for those who love Him and were called according to His purpose." (Romans 8:28) - 5 years ago I cried out to God and said "Lord if I ever needed you I need you now......Please use me and all I will go through to bring Glory to you" Wow, did He ever....the journey has been anything but dull.....
I will share my story with the Kenyan people.... I will tell them that when we walk with the Lord, even when a situation seems at it worst, God can and does turn it all for good. That's not to say that any given situation we are in goes the way we want it too.....but God can take all situations and make them blessings in our life....Those blessings come when we know that God is God and living for Him is what becomes the most important thing. That's when peace, contentment and true happiness reign in our hearts. It's where my journey led me and I am incredibly thankful.
You guys have always been important to me and always will be. I check in on you often and pray as I read the stories.
Love and God's Peace I pray for you all.....
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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05-28-2010, 07:52 PM
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#2
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: 5 years and the journey has been anything but dull
I was so moved by your post. Thank you for sharing it. And God speed.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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05-29-2010, 05:10 AM
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#3
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: 5 years and the journey has been anything but dull
Mary Jo,
Congrats on 5 years, a very important milestone, and what a gift to make this trip to help others....but that what Mary Jo is all about...prayers and love sent with you on this trip to benefit others!
__________________
"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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05-29-2010, 11:04 AM
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#4
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: 5 years and the journey has been anything but dull
Dear Mary Jo -
The Power in your life comes powerfully through in your post.
This is a wonderful opportunity you have been spared to accomplish. We need good in this world to counteract the bad, and you really help balance the scales.
Safe and happy travels, my friend.
__________________
"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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05-29-2010, 12:01 PM
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#5
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Senior Member
Join Date: Apr 2010
Location: Louisiana
Posts: 53
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Re: 5 years and the journey has been anything but dull
I can relate to all that, too! I was told on April 1, 2010 that I had breast cancer. After scheduling surgery for May 10, and thanking God for being with me, I had a vision on May 1 of a green tee-shirt with these words "Complete Power Healing for 10 days". I woke up and wondered what??? Then I counted and realized it was 10 more days until my surgery. After surgery, Dr. Abraham told me I had no cancer in any nodes and that only less than 1/2" was in the remaining tissue removed by previous lumpectomy. I know that God is using me for his Glory but will have to follow where He leads me to find out more. He also prompted me to read Psalms 116 right before I fell asleep and had his vision for me. God is Holy!
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05-29-2010, 03:05 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: 5 years and the journey has been anything but dull
Mary Jo - Congrats on the 5 year mark. Here's to the next 5 and more! How wonderful that you are going on this mission trip to share your gifts and your faith with others... and as you know you will receive as much or more than you give. Blessings to you on your continuing journey. Pam
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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05-29-2010, 04:43 PM
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#7
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: 5 years and the journey has been anything but dull
I'm so glad to share your happy news Mary Jo, many congratualtions!!!!
__________________
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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05-29-2010, 04:47 PM
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#8
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Re: 5 years and the journey has been anything but dull
Congratulations and Gods speed on your trip.
Take care and be safe.
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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05-29-2010, 11:15 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: 5 years and the journey has been anything but dull
Mary Jo,
Wonderful to hear from you and learn of God's plan working in your life. You will be an inspiration to those who her your story, just as you have been an inspiration to us.
Much love,
__________________
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.......
14 YEARS NED!
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05-30-2010, 05:56 AM
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#10
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Senior Member
Join Date: Oct 2005
Posts: 823
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Re: 5 years and the journey has been anything but dull
Mary Jo, A BIG CONGRATS on hitting the 5 year mark.
Your Mission work sound's like it will be very rewarding.
Sending Love and Prayers for a safe trip.
__________________
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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05-30-2010, 05:37 PM
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#11
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: 5 years and the journey has been anything but dull
Mary Jo,
Congratulations on your big 5 coming up!
Wow - your trip sounds exciting and so very special.
Hugs,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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05-30-2010, 05:50 PM
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#12
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Re: 5 years and the journey has been anything but dull
Congratulations, Marejo! As already stated, you are such an inspiring presence here. Good luck on your journey!
__________________
For Nicola
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05-30-2010, 06:06 PM
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#13
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Re: 5 years and the journey has been anything but dull
Mary Jo ~
Thank you for sharing your plans and yipee on 5 years!!!
Have safe travels and please let us know how it all went!
Hugs ~ Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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05-31-2010, 06:25 PM
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#14
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: 5 years and the journey has been anything but dull
Hi MJ.
welcome to the 5 yr club.
I loved your story and what you are doing. I am a true beleiver and feel strongly that God pulled me through this as well.
You are surely doing God's work.
God bless you.
__________________
Linda
Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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05-31-2010, 07:28 PM
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#15
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: 5 years and the journey has been anything but dull
Congrats on reaching the 5 year mark, Mary Jo!!
Have a wonderful time in Kenya, it sounds like it will be a very rewarding and emotional experience.
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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06-01-2010, 07:56 AM
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#16
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: 5 years and the journey has been anything but dull
Mary Jo,
Congratulations on five years. You have always offered me HOPE throughout this journey. It is truly amazing how other's words can affect us.
I will be thinking about you during your mission trip. God Bless You.
Amelia
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06-06-2010, 01:34 AM
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#17
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Re: 5 years and the journey has been anything but dull
MaryJo,....congratulations on your 5 yr mark!! Have a great time on your trip!!
__________________
*** 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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06-06-2010, 01:56 AM
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#18
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Re: 5 years and the journey has been anything but dull
Mary Jo,
You are truly blessed. Enjoy your trip to Africa...such an important mission.
Thank you for sharing.
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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