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08-05-2007, 12:52 PM
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#1
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Good news update - still NED after FIVE years
A friend of mine called this week to say that her PET scan was finally clear after over five years of fighting mets. She had Abraxane and Avastin last year and then some bone spots radiated this summer. She is another amazing warrier woman who spent years in smaller skirmishes with nodes and bone, but finally had to call out the big guns, which worked! I am SO overjoyed for her!!!
While she has been chipping away at her mets, I have been NED now for over five years. I HAD to take the big guns as my mets were overtaking my liver fast and furiously. It seems that a number of us here have had good success in clearing our livers of mets - large and small. That is a good trend to see, as I had no idea what my chances were in 2001.
My brain MRI last week showed stable, but the terminology has now changed. No longer being called radiation necrosis, but scarring. The difference is that with the necrosis, it can spread and damage healthy brain tissue, whereas the scarring is just like any scar. It shows where there was a wound and does not change.
This is on the basis of the spots not changing in size for about a year. This change of terminology is more of a "best guess" on the part of my rad onc, since the scans cannot distinguish between tumor, necrosis or scars. It is also based on the info that I am NED in body and markers are rock solid. But I will go with it!
So, I continue on 3-weekly Herceptin. I also must credit R.B. for his extensive input on balancing omegas 3,6 and 9. I have made a very conscious effort to work on that and feel my diet is helping me to maintain NED. I also use very high quality olive oil liberally. The research on that against HER2 was all I needed to hear.
My best wishes to all of the rest of you in active battle against your tumors that your PET scan will also be dark as midnight one of these days soon.
P.S. For those of you who have been kind enough to ask after my dad, I thank you. He is stable, but very weak and still on the ventilator. Thus he is in a specialized skilled nursing facility about 15 miles from me. My mom is still around as she won't leave him. His progress with the therapists is happening, but extremely slow.
__________________
"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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08-05-2007, 01:17 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
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Thank you Steph for being a symbole of hope and courage for all of us. LiveStrong,
I miss my trips to Seattle and seeing you.
Big hug,
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08-05-2007, 01:33 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Great news!!!
Thank you for your sharing you excellent news, Steph. Your posts gave me hope three years ago when I first joined this support group and was not in great condition. The trial I had hoped to enter is currently closed but may open again this month. As a result, I continue to stay off all treatment except for zometa. I hope to get on this trial if it opens again, and that it will also put me into NED. Being off of Herceptin is scary, but I think it doesn't hurt to give my body a short rest.
I hope that your father continues to improve.
Best wishes,
Barbara H.
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08-05-2007, 01:41 PM
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#4
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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Thank You
Dear StephN,
Thanks for posting good news - sometimes this home away from home is filled with sadness for our her2 family - it is always wonderful to air it out with the good news too, as it gives us all hope!
Have a great day!
Donna
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08-05-2007, 02:26 PM
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#5
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Hi Steph!
What wonderful, encouraging news from you today! Everyone who posts this great NED news gives each of us hope and courage. Sometimes the battles are tough, and this kind of news keeps us fighting and believing. Thank you for taking time to share your incredible news! May you be our encourager for many, many years to come! ma
__________________
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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08-05-2007, 02:33 PM
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#6
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Senior Member
Join Date: Aug 2006
Location: So California
Posts: 223
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Great news
Steph:
I so LOVE to read success stories like yours. Congratulations!
__________________
Leslie's Sister (Lisa)
Diagnosed 5/17/06
Left breast Stage II
5 cm. Her2Neu+++, ER-, PR-
1 positive node out of six,
double mastectomy 6/9/06;
TCH started 7/12/06
last chemo 10/25/06
herceptin ended 6-11-07
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08-05-2007, 02:47 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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Congratulations Steph! That's great to hear, may you have many more years of NED!!!
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08-05-2007, 02:47 PM
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#8
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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thank you for sharing ...it help me a lot because you are one of my roll model....seriosly
__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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08-05-2007, 03:28 PM
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#9
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Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
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Happy Happy, Joy Joy to Steph
You have always been asurvivor in my eyes, even if it took 5 yrs. You wil can wear a pink ribbon with an NED attachment. Great idea Huh !!??
I LOVE HEARING YOUR WONDERFUL NEWS.
Hugs, Christine
Say Hello to Dr Gralow
__________________
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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08-05-2007, 03:33 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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wonderful news!!! What do you take for your omega 3-6-9's??
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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08-05-2007, 03:51 PM
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#11
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Member
Join Date: Mar 2007
Posts: 19
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I am so happy to hear that you are NED after 5 years. I hope to be able to say the same in 4 1/2. Thank you so much, you are such an encouragement to me.
Cheryl
__________________
Cheryl Hamilton
DX 2/6/07
LB Mastectomy 2/12/07
3 out of 9 Lymph nodes +
4 AC DD completed
12 Weekly Taxol/Herceptin completed 7/07
Herceptin completed 5/08
33 radiations completed 9/07
Tissue expander placed 7/08
Tram Flap scheduled 12/15/08
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08-05-2007, 04:21 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Wonderful news Steph! Congrats!
________
MARIJUANA BUBBLER
Last edited by sassy; 08-22-2011 at 09:25 AM..
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08-05-2007, 04:29 PM
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#13
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Wow. What a wonderful post. Thank you for sharing both your and your friend's incredible story. It is so encouraging.
I'll have to break out the olive oil. Wishing you many, many, many more years of ned.
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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08-05-2007, 04:36 PM
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#14
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Senior Member
Join Date: Apr 2007
Location: Shaker Heights, Ohio
Posts: 86
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Just in time for me!
Dearest Steph,
you give me so much encouragement! You have had a long road in the last five years and this is the best news - every one of us with mets want to hear!
Keep the faith, keep going for yourself and for us,
love,
Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment
'One does not get to choose one's adventures'
I'm experimenting with my diet, using green tea, flax seed curry and olive oil
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08-05-2007, 04:36 PM
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#15
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Wooooo Hooooo! That is terrific news for both you and your dear friend. Its SO NICE to hear such encouraging news...we can't get enough it. I am so happy for you Steph. Thanks for sharing your good news with us....its so up-lifting. May you stay on a long road thats never ending of NED. 
I will keep your Dad in my 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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08-05-2007, 05:36 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Dear Steph,
Your good news is so very exciting! You have been through so much! I have watched for your posts, and am always so delighted to hear good news. What a warrior and example you are! I hit my third year of being NED in June and I am looking forward to being able to reach 5 years. I appreciated your private email checking up on me. I have finally gotten my username and password coordinated so I am able to post again, and this post to you is my first in quite some time. Congratulations on your milestone, and I'm sending prayers for at least 5 more! Hugs, TriciaK in St George, Utah
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08-05-2007, 05:54 PM
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#17
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Congratulations to you. What an inspiring post to read.
God Bless,
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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08-05-2007, 07:01 PM
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#18
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Steph,
You are an inspiration! Congrats on your five years w/NED! I am so happy to read that your friend has beaten some odds herself. I love to read these uplifting stories. Thanks for all you do!
Hugs,
Lexi
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08-05-2007, 07:09 PM
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#19
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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Dear Steph,
I am so happy for you . here's to a lifetime of NED my friend!!!!!!!!
__________________
Love and Hope
Karen
IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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08-05-2007, 07:55 PM
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#20
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Steph,
Congratualtions on 5 years NED! That is so encouraging to all of us here on this board to hear such good news. You are an inspiration to us all.
Also great news about your friend! Good to hear that your father is in stable condition as he's been through quite a bit.
You are in my prayers.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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