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Old 10-12-2009, 03:52 AM   #1
fullofbeans
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Posts: 617
Question Stage 4/NED-how long did it last for you?

I have a scan on 23 Oct and have been NED since Jan 07 so 2 years and 9 months.

I was wondering that since I was a very aggressive grade 3 with very fast tumours (qualified as terrorist tumours by a radiologist) I kind of think that if they should have been back they would have been by now...Except for Missy it seems to me that stage 4 seems to relapse within 2 years or then go on to become long term NED..

Is this an impression or am I completly wrong..(???) if you could say either how long your stage 4 NED has lasted before first relapse or hopefully how long it has been so far and what grade you were it would be good to know.

Thanks
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 10-12-2009, 05:02 AM   #2
jhandley
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Smile Re: Stage 4/NED-how long did it last for you?

Hi
I have been NED for 4 years less 9 weeks. I had one 15 mm spot on the liver which disappeared rapidly. Been on Vit H for 4 years, now having a herceptin holiday.
Cheers
Jackie (down under)
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Old 10-12-2009, 09:04 AM   #3
Missyw
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Re: Stage 4/NED-how long did it last for you?

Hi Full of Beans,

So sorry to be the one to ruin our stats...really sorry. I did go 3 years and two months. A very great ride if I do say so myself. Anyway, I am going strong after my resection. H only for now. Technically, NED again!

Love you,
missy
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Missy W.

Diagnosed 1/06; Her-2, er/pr+
lumpectomy
4 Rounds A/C
tiny area of interest in liver - watching
12 rounds of Taxol w/ Herceptin
tiny area cleared - Stage IV (because area responded to chemo)
Herceptin weekly
27 rounds radiation
NED 8/06
10/06 oopherectomy
Arimidex
1/07-7/07 Vaccine Trial - UW Seattle
3/09 liver met back
3/09 Navelbine, Herceptin Aromasin
6/09 Liver Resection
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Old 10-12-2009, 02:07 PM   #4
Sherryg683
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Re: Stage 4/NED-how long did it last for you?

It will be 4 years in December that I was diagnosed, stage IV..2 small lung mets to lungs...I am grade II. At my 6 weeks into chemo another scan was done and they could not see anything noticeable, although I continued chemo for 4 months. I have been NED ever since. I get scans every 6 months, along with brain scans. I continue on Herceptin indefinately. My oncologist told me that in all likely hood, if I were to relapse it would be in the first 2 years, he expected the first 7 months. I'm still NED and feeling great, like my old self. Here's to long NED for all..sherryg
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Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!

Last edited by Sherryg683; 10-12-2009 at 02:09 PM..
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Old 10-12-2009, 07:36 PM   #5
Lori R
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Re: Stage 4/NED-how long did it last for you?

Hi Full of Beans,
I was diagnosed in October 2007, and started chemo at the end of November. Completed chemo in March 2008. My April 2009 PET/CT showed a recurrance in the liver.

So...it appears my case supports that if the Vit H can't quite win the battle, it does so quickly.

But....I was a grade 3, so I wasn't surprised.

I am SOOO hoping for you that being this far out is a great sign that those pesky cancer cells are "gone baby gone"

Lori
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 10-15-2009, 02:03 AM   #6
fullofbeans
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Re: Stage 4/NED-how long did it last for you?

Thank you all for the replies and it seems that your Sherry's doc agrees with this theories.. Missy the trial in washington may have slow down process (I hope that I do not fit in that category) but glad that you are doing so well now..

grrrr scan time soon..I am getting used to it but always at the back of my mind..
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 10-15-2009, 06:18 PM   #7
mamacze
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Re: Stage 4/NED-how long did it last for you?

Hi Honey,
I was diagnosed stage 4, grade 3 in April, 2004 and have been NED since my first round of Chemo (Herceptin/Navelbine).... 5 and 1/2 years and counting! God speed to you; and hoping you too dance with NED for a long time.
Love Kim from CT
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2022 On Herceptin and NED continues - WOOT WOOT!
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Old 10-22-2009, 05:56 PM   #8
charlotte
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Posts: 131
Re: Stage 4/NED-how long did it last for you?

Each time I have a "progression", it is aroud 18 months. This disease stinks..So many wonderful people have shared their progress, ups and downs etc..
I go back to my Doc. on the 24 and we will see what is going on . He mentioned trying a new drug.. And I forgot to ask him again.. It threw me into a minor panic while I was trying to absorb this. Will find out in a few days, I hope my port is still in good shape (Jan 09) has been itching like crazy.
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Old 10-27-2009, 04:10 AM   #9
fullofbeans
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Re: Stage 4/NED-how long did it last for you?

I love to hear about good long NED stories and feel sorry for the less lucky one that have recurred. except for Missy which I knew about the story seems to be that 2-3 years even for stage 4 is a major defining period..more testimony would be great.

I am always in two minds, being quite young part of me wants to just get back to thinking that I should just get on and make little sacrifice now and invest time now for later i.e working hard at something for future rewards..

And part of me knows what my risks are to recur and I just want to live for the now and not care,
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama

Last edited by fullofbeans; 10-27-2009 at 04:14 AM..
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Old 10-27-2009, 09:58 AM   #10
TSund
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Re: Stage 4/NED-how long did it last for you?

What a great thread. Encouraging.... You go girls!!!

It would be interesting to track the similarities if any are obvious for those with such good fortune.

TRS
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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Old 10-27-2009, 11:12 AM   #11
StephN
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Wink Re: Stage 4/NED-how long did it last for you?

Hi Beans -
Hope your latest scans and lab work will show that all is boringly the SAME as last time - NED.

You are familiar with my story, but for those who are not - I am NED from ears to toes since July of 2002. This is after a fast and furious tumor invasion of my liver. Two brain mets were caught in Jan of 2005, and nothing since that time.

So my answer is "still lasting." Indefinitely, I pray.

I continued to take Herceptin every three weeks until last December. My latest blood work and CT scans show I am still holding my own with NED.

There are some here like Andi who has had longer time with NED than I have.
__________________
"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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Old 10-28-2009, 06:39 AM   #12
yankeebikachic
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Posts: 73
Re: Stage 4/NED-how long did it last for you?

So far so good for me, too. Scans every 3 months and just on Tykerb now.
__________________
4/06 Found small lump, biopsy + at 34 yrs.
5/06 Diagnosed IIIC, lumpectomy, 11/11 nodes HER2+
6/06 port placed. 4 Ad/Cyt and 4 Tax.
11/06 bilateral mastectomy
12/06 begin Rads
1/07 Finished Rad-started H, weekly for one year.
1/08. Finished H, scan showed activity in nodes, Doc says 'not to worry about it' and sends me on my way.
7/08 Scan shows numerous involvement in armpit, also large active nodes in supr. clav.
Doctor refused to give me HER2 meds.
8/08 fired doctor, found another. Started Tykerb/Xeloda. After one round, nodes are shrunk and normal sized!
12/08 NED continue Ty/X
3/09, 6/09, 9/09, 11/09, all scans show NED
Dropping X, continue Tykerb
As of 6/10, 3/11 still negative, continuing Tykerb...
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Old 10-30-2009, 12:19 PM   #13
fullofbeans
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Re: Stage 4/NED-how long did it last for you?

Well well.. 3 years perhaps 3.5 years seems to include a lot of the stage 4 than have recurred, with the first 2 years being quite critical..

This is encouraging would love to hear from all stage 4 stories..

StephN it is never "boring" to hear that I am still NED, will get my result next week.. so I trully hope to be very boring to you!!!;-)
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 11-03-2009, 02:52 PM   #14
fullofbeans
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Posts: 617
Re: Stage 4/NED-how long did it last for you?

Got the result of my scan yesterday I am still NED yipehh!.. 2yr 9 months..
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 11-03-2009, 04:25 PM   #15
tricia keegan
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Re: Stage 4/NED-how long did it last for you?

Wonderful!!!!
I love this thread, and am delighted you ladies are doing so well
Congrats Fullofbeans, I could'nt be happier for you!
__________________
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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Old 11-03-2009, 07:15 PM   #16
caya
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Re: Stage 4/NED-how long did it last for you?

Great news, FOBeans!!

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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Old 11-04-2009, 10:59 AM   #17
julierene
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Re: Stage 4/NED-how long did it last for you?

Here is my signature...
__________________
Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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Old 11-04-2009, 11:25 AM   #18
StephN
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Wink Re: Stage 4/NED-how long did it last for you?

Dear Beans -
Well - thanks for the "boring" news. No change. No change is good!

Looks like all the work you went to in getting the HER2 vaccine, change eating habits, and exercise has been very positive for you.

Let's have more of the same-old, same-old next time!
__________________
"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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Old 11-04-2009, 11:27 AM   #19
julierene
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Posts: 327
Re: Stage 4/NED-how long did it last for you?

Wish I could have been eligible for that TDM-1 trial, but it has never gone my way...
__________________
Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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