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08-05-2007, 08:05 PM
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#21
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Senior Member
Join Date: Nov 2004
Location: Streetsboro, Ohio
Posts: 365
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Great news Steph. You have been such a wonderfull role model for me these past 3 1/2 years. I never thought I would live 6 months with mets, but you and many like you have proven we can live a quality of life whether we are NED, stable or in active disease. Thankyou and praying NED never leaves your side. Lu Ann
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08-06-2007, 09:31 AM
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#22
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Five years and going strong
Dear Steph,
From one "5" to another, a toast to your continuing good health, with plenty of resveratrol! I'm hoping you are listening to NPR today (a very interesting segment on wine production in Bordeaux in regard to global warming), and another discussion later today on All Things Considered, so tune in if you get the chance...
As always,
AlaskaAngel
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08-06-2007, 01:04 PM
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#23
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Congrats Steph on your 5 years of NED - You are a true inspiration for us all, especially we newly diagnosed gals looking for hope -
all the best, and may you continue your dance with NED for many years to come.
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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08-06-2007, 07:53 PM
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#24
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Senior Member
Join Date: Nov 2004
Location: Henderson, NE
Posts: 413
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Hi Steph, i'm so happy your doing good!!!!! I miss talking with you, i know everyone is so busy, living i guess!
__________________
Michele Ulmer
dx: August 2003 stage 3b 35 pos nodes ER/PR neg Her+
4 AC 12 weekly taxol
one year Herceptin in trial
35 rad tx
vaccine trial Seattle
NED
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08-06-2007, 08:10 PM
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#25
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Steph, that is so good to hear! I take hope from your friend also, as I am one who continues to battle "small" mets, that one day I will be NED again.
So glad your dad is improving, even though slowly, as that is so much better than the alternative.
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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08-06-2007, 09:05 PM
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#26
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Senior Member
Join Date: Aug 2006
Posts: 492
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Steph,
So good to hear a trifecta of good news- counting in your dad here too!
I wish you continued good health and happiness,
Margerie
__________________
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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08-07-2007, 03:03 PM
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#27
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Thank Goodness
Many women and a very wonderful man, LOL..have recently been told that the cancer has spread to brain, liver, lungs. As the person who owns that wonderful man, LOL (sorry, this post is making me silly with joy) I NEED YOU TO KNOW THAT WE NEEDED TO HEAR THIS POST!!!
Not only is my husband and myself so elated for you, but WE NEEDED THAT!! Thanks for keeping us posted with your journey, it gives us hope and peace to see that this does happen. Maybe next time it will be another person we love. Each NED case proves that this beast can be tamed and that we have just as well as a shot to meet NED as the others we love that experience it.
Thanks for loving us enough to post both good and bad about your journey, especially because I do go over my friends journeys in my mind when I pay tribute to them or pray.
Looks like our prayers are working!!
Waiting For A Miracle...and commanding one soon!!>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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08-08-2007, 06:27 AM
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#28
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Member
Join Date: Nov 2005
Posts: 7
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Congratulations Steph! It makes me happy to hear good news like yours. I will share my story to encourage others with brain mets as I have been doing well also.
It has been 2 years since I was treated for brain mets and I am still NED. It has been 8 years since my original diagnosis. As you read this story please note that I have been having a normal life, except for my initial treatment in 1999 when I needed help with my three children (at the time ages 1, 4, 7).
1999 - At age 39, I was diagnose with breast cancer: 5 tumors in right breast, 20/36 nodes involved, ER+/PR-, Her2+++. I had a modifed radical mastectomy followed by high doses of Adriamycin then Taxol, then Cytoxin (this was a reasearch study). Then a month later radiation for 25 days. Finally I was put on tamoxifen and declared NED for about 2.5 years,
2002 - Tumor markers started going up and tiny bone mets showed up after that. I switched to Aromasin and Zoladex and continued on that for about a year with a very slow progression of the cancer.
2004 - With my ca 27-29 in the 400's and my cea something like 36 and a tiny spot on my liver and maybe my lung, I switched to Herceptin and Navelbine weekly, Zometa every three weeks. In about 6 months, tumor marker were normal, scans looked great. Continued this combo. for 6 more months.
2005 - Cut back to Herceptin/Navelbine every 3 weeks/zometa quarterly.
2005 - Brain mets arrive. One 2.9 cm and two more tiny ones. My symptom was weird visual disturbances. WBR for 21 days while continuing Herceptin/Navelbine. Three months later Stereotactic radiosurgery (same idea as cyberknife) on the remnants of the big tumor.
2007 - Still NED in body and brain. I continue getting Herceptin every three weeks. I get MRIs of my brain ever 3 months, ct scans lungs and pelvis every 4 months along with muga and bone scans. TOMORROW 8/9/07 I get my next brain scan. Wish me luck!
I.V.W.
__________________
IVW
Stage 4 for five years and still going strong.
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08-10-2007, 03:57 PM
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#29
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Dear I.V.W. - thanks for your story
This is EXACTLY what I was hoping for when I made my post. That more success stories would emerge either from some "lurkers" or new eyes to this board. We know there are more like us out there and by the responses to my post, it does so much good for those either just newly diagnosed or battling with mets.
Those down days can come too often for those in active treatment and these success stories can provide a so much needed lift. Even those of us cuddling with NED have our moments of doubt or wondering when the next met will rear its ugly head. It is a hard yolk to carry no matter what stage we are. Heavier some days than others.
I finally had time to book with my massage therapist for a visit today. Had not seen her in a few months. She also worked over the scar tissue that has developed from my lumpectomy and rads. Those changes have been going on for a while, but the thickening and stiffening of the tissue was getting uncomfortable.
THE BEST NEWS. While writing this post my Mom called. She said that the therapists got Dad on his feet and standing on his own today! This is the first time since early MARCH! Prayers along with some hard work are finally paying off.
__________________
"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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08-11-2007, 08:21 AM
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#30
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Senior Member
Join Date: Aug 2006
Posts: 492
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WOOOOOOOHHHOOOOOOOOOOOOOOO!!!!
So happy for you and your dad Steph. The viking marches on..........
__________________
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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08-12-2007, 06:27 PM
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#31
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Love it!
Stef,
Love your beautiful news....so happy for you and also happy your father
is doing well also even if it is ever so slow...would you share the product
information on which brand of Olive Oil you are using? I am most curious
and also your diet routine on the Omega 3 6 and 9...I take Omega and of course use Olive Oil but I would love to know your model....esp. since you
are having such wonderful results.
Wishing you continued NED....so inspired by you.
God Bless,
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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