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10-16-2009, 06:37 AM
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#1
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Senior Member
Join Date: Jun 2008
Location: NY
Posts: 81
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Re: ~Mighty Oak Has Earned His Wings And Halo...
Marie,
I'm so sorry to hear but so relieved that our loved ones are now free from suffering. Thank you for sharing your life with us. You and Ed really are an inspiration to me. I will never forget your fiesty posts.
My thoughts are with you at this difficult time.
love,
Sue
__________________
Hi i'm Sue. I've been part of the her2support family since 08'. My amazing mother Hong was her 2 stage IV 9 years and bravely earned her wings, I still love this board and continue to her fight. Plz reach out if you want to connect:)
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10-16-2009, 07:03 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: ~Mighty Oak Has Earned His Wings And Halo...
Marie,
There are no words to express the feeling of great sadness but also great joy that Ed's passing brings. Sadness that he has gone from us, and most especially from you, but joy that Ed's fight is over and he has earned the greatest reward.
My love to you,
__________________
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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10-16-2009, 07:30 PM
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#3
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: ~Mighty Oak Has Earned His Wings And Halo...
Dearest Marie, We all knew this day was coming but it just doesn't make it any easier. My heart really reaches out to you at such a difficult time. Oh how I wish I could give you a big hug in person. I felt like I knew Ed from all your postings...he was such a big part of our family & will truly be missed. This is so sad. I send my sincerest sympathies to you and your family. Please get some rest and know how much we all love you. God bless you...your in my continued thoughts and prayers.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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10-16-2009, 07:32 PM
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#4
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: ~Mighty Oak Has Earned His Wings And Halo...
Dear Sweet Marie,
Big hugs to you, so sorry for the loss of Ed.
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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10-16-2009, 07:38 AM
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#5
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: ~Mighty Oak Has Earned His Wings And Halo...
Marie,
This is the first chance I have had to check in this morning. Please try to rest. My heart aches for you. Call you later.
Amelia
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10-16-2009, 08:13 AM
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#6
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Senior Member
Join Date: Jan 2008
Posts: 154
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Re: ~Mighty Oak Has Earned His Wings And Halo...
Marie, I'm so sorry that Ed lost his battle with this damn cancer. I've been dreading reading this but like you, I'm telling myself that he is finally free from it. I don't know what else to say other than my heart goes out to you and Ed......
__________________
Diagnosis and Treatment: DX 12/07/07
Male Diagnosed with DCIS at age 39
Mastectomy on right breast
Tumor Stage pt1b NO MO
DCIS Tumor size 1.5 x 1.x .6cm
Infiltration tumor size .25X.17 cm
Bloom-Richardson Grade 3(score 8)
Nuclear Grade 3 with comedo necrosis
Estrogen+/Progestrone+/HER-2/Neu +++
FISH ratio 4.31
Lymph node removal scheduled 1/07/08
17 nodes tested and all negative 1/08/08
Started Tamoxifin 1/29/08
Oncotype DX score 52 (off the charts, according to my onc!!!)
Starting TCH 3/14/08
BRCA I Positive BRCA II Negative
Finished TC 6/27/08 continue Herceptin
8/1/08 Herceptin stopped due to low Muga score
Mastectomy on left breast 11/10/08
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10-16-2009, 08:19 AM
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#7
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: ~Mighty Oak Has Earned His Wings And Halo...
((((Marie)))) Your HER2 family has said it all so eloquently....We love you and send our most sincere sympathy. Do your next work in tribute to Ed and for the good of us all. I wish you comfort and healing.
Barb A.
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10-16-2009, 08:30 AM
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#8
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Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
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Re: ~Mighty Oak Has Earned His Wings And Halo...
On behalf of Joe, myself, our Board of Directors and the entire HER2 Support Group Community, I wish to send our most heartfelt condolences to you and your family.
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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10-16-2009, 08:47 AM
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#9
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Re: ~Mighty Oak Has Earned His Wings And Halo...
Marie, Jen and I would like to extend our deepest sympathies to you. We know that Ed is at peace at last from his long, brave fight. We wish peace and comfort for you also in the fond and loving memories you have of your life together. Our thoughts and prayers are with you.
__________________
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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10-16-2009, 08:57 AM
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#10
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Re: ~Mighty Oak Has Earned His Wings And Halo...
Dear Marie,
Please accept my prayers and love. Your Ed was a warrior and a true fighter. You were a great voice for him during his fight. Thank you for being such a wonderful caregiver to Ed. I know that he could feel your love for him til the end. What more could one ask for.
Love,
Lexi
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10-16-2009, 09:14 AM
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#11
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Re: ~Mighty Oak Has Earned His Wings And Halo...
Dear Marie,
I am so sorry for your loss. May Ed rest in peace with God. I pray for you to find peace.
love,
shobha
__________________
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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10-16-2009, 09:40 AM
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#12
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: ~Mighty Oak Has Earned His Wings And Halo...
Well, Sweet Marie
I've been holding my breath, along with you, for weeks. Thinking about what to say and knowing that no words are worthy, or necessary. You know you are gently but firmly wrapped in my love, and that you will go on. And that your Mighty Oak is now soaring, whole and complete and free from pain.
Very shortly after my mom died, I had a dream in which I was stuck in a large crowd moving through turnstiles - like into a concert or ball game. The crowd wasn't moving at all, it was stifling. My mom was standing on the railing separating the lines. No, she was actually dancing - doing a jig high above the rest of us. Joyful and free at last...
Much much love to you my sweet Marie.
__________________
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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10-16-2009, 10:38 AM
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#13
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Senior Member
Join Date: Aug 2006
Posts: 492
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Re: ~Mighty Oak Has Earned His Wings And Halo...
the Mighty Oak will live forever in your heart. Thank you for sharing your incredible love story with us. Big hugs and more hugs, chin up Marie so he can see your face.
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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10-16-2009, 11:25 AM
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#14
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Senior Member
Join Date: Jun 2007
Posts: 216
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Re: ~Mighty Oak Has Earned His Wings And Halo...
Dear Marie,
You have been so strong for Ed with all your love and care that has shone out on this site.
Take care.
Sending love.
Janie
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10-16-2009, 11:29 AM
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#15
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: ~Mighty Oak Has Earned His Wings And Halo...
My dearest Marie,
I am relieved for Ed, and sad for you. I wish I could fly over and hold you in my arms and tell you it will be okay. He was a great man and his spirit will linger with us for a long time. Probably till you join him!
May his memory help you through the bad times, and inspire you in good times.
Hugs
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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10-16-2009, 11:30 AM
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#16
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: ~Mighty Oak Has Earned His Wings And Halo...
I want to say that I am so sorry for your loss. My sympathies go to you and Ed's family. The Mighty Oak is watching over all of us and providing shade for all cancer patients now. Ed's experience taught us alot about fighting cancer.
I want to add Ed to the "in loving memory" section of my website. I was just there starting to update it, but I am not finished, so I will add his name the next time I do more updating.
Please try to get a little rest before you go back to work and start fighting cancer on behalf of everyone. We can wait until you are well rested and ready to fight.
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10-16-2009, 11:33 AM
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#17
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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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Re: ~Mighty Oak Has Earned His Wings And Halo...
Marie,
You have my heart felt sympathy....and your hubby my blessings.
Barb
__________________
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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10-16-2009, 11:58 AM
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#18
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: ~Mighty Oak Has Earned His Wings And Halo...
So lucky he was to have you fighting by his side.
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10-16-2009, 12:39 PM
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#19
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: ~Mighty Oak Has Earned His Wings And Halo...
Dearest Marie -
Accept my big cyberhug, and hold on to all of us who are here to lean on as long as you need.
Your precious Ed is in the big "cruise ship in the sky" and waiting till the time he can get you a coffee again. Until then his large spirit is alive in many sectors bringing knowledge and a will to fight to others who suffer from or treat such rare cancers.
Let your sails down for a bit and run with the current. May you content in the unconditional love you have known and still feel for a long time in the future.
__________________
"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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10-16-2009, 01:53 PM
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#20
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: ~Mighty Oak Has Earned His Wings And Halo...
Dearest Marie,
Words fail me. I am so sorry.
Love never dies...Take care of yourself
__________________
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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