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06-26-2008, 10:13 AM
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#1
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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All those dancing with NED (no evidence of disease)
Sisters and brothers,
It seems we have had so many losses these last few months. My heart breaks for each and every sister and their families, who have lost the battle to this terrible disease. Many, like Sheila, are struggling with so much right now. It is wonderful to see so many respond with prayers, concern and support. Often I am so overwhelmed with the sadness I can't check the site for days.
My concern is for our new sisters visiting this site. They may find only the sad events and could become discouraged, loosing that much needed hope. With Herceptin being available now to Early Stage BC patients there are many, many positive stories out there. It is only natural to go on with life when you get those good reports and not look back. Sisters like Becky, Jean and others who have not reoccurred, are here to offer their knowledge. I am so grateful to them. Please, please continue. The site needs you!
I think it would be helpful for some long term survivors and others who have not reoccurred to post. I totally believe this site is for everyone, especailly our sisters who are struggling. In no way does this mean we do not feel the pain others are experiencing. But we (I) also need some positive news.
Lets see if we can also hear from our sisters who are dancing with NED (no evidence of disease).
I'll start the ball rolling. I just had my 2 year check up (well almost 2 years, 22 months to be exact). All is well and I am so thankful. I am off to change my signature!
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
Last edited by DonnaD; 06-28-2008 at 06:19 PM..
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06-26-2008, 10:25 AM
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#2
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Senior Member
Join Date: Nov 2006
Posts: 35
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NED 6 years later
Hi - in April 2002 (age 47) I had a 1.8cm tumor, 1+ve node, 9/9 grade, vascular invasion, tumor necrosis (my path report was covered with the recurring phrase "poor prognosis"!).
I had a lumpectomy, ACx4, taxol x4, 37 rads (no Herceptin) and I'm doing just fine. My twin sons just graduated from UW (Seattle) last week, my 17 year daughter went to her first prom last month, and while my husband has recently been diagnosed with "probably MS" life is still very good for our family.
Marianne (in Vancouver, Washington)
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06-26-2008, 11:23 AM
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#3
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Senior Member
Join Date: Jan 2008
Location: Virginia
Posts: 116
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reply to NED
I am also NED 2 years +
grateful to see my three daughters grow an additional two years
Health to all
__________________
Melissa
04/06, (42), 2cm tumor, 7/13 nodes, one positive node under clavicle
mastectomy/reconstruction
grade 3, stage lllb, er-65+, pr-90+, her2+++(80%)
4/AC, 12wks TH then 6wks rads
40 wks herceptin, and tamoxifen.
onc test tamoxifen resistance = poor metabilizer
04/07 ooph & on arimidex
08/07 completed herceptin
04/2022 - 16 year survivor!
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06-26-2008, 11:49 AM
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#4
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Senior Member
Join Date: May 2006
Posts: 144
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Hi Donna,
What a great thread to start - and sorely needed. I don't post often, but I do check in frequently, and wish everyone the best.
As my sig notes, I had treatment and a recurrence, but as of 9/07 I am NED! I ran the Boston Marathon for Dana-Farber to celebrate my end of treatment, in honor and memory of far too many cancer warriors, and to raise money for cancer research so that we and our children may live long lives cancer-free.
There's a possibility (probability?) I may have another recurrence, but research just needs to stay a step or 2 ahead so we have the options we need to fight this @#$ disease.
take care,
Anna
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- Anna
Stage I - DX 9/2005 ER/PR-, HER2+, grade 3, DCIS, IDC multi-focal (1.05cm)
DD 4 A/C finished Jan 31, 2006
Herceptin weekly finished Jan 31, 2007
recurrence to chest wall on last month of Herceptin
Stage 3B - 3/15/07 - 2 carcinomas in dermal lymphatic
Rads finished 6/5/07
12x TH finished 9/10/07
12/07 - Clear scan!
3/08 - 4 month Melatonin trial
1/09 - osteoperosis - start Alendronate
2/09 - 4-month Simivastin trial
3/13 - take drug holiday after 5 years of Alendronate
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06-26-2008, 12:03 PM
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#5
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Member
Join Date: Sep 2005
Location: PA
Posts: 15
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I am 3 years 5 months past diagnosis and dancing away!
__________________
1/05 Diagnosed at 31 years old
2/05 Partial Mast, 8/18 nodes positive
Stage IIIA,her2, er/pr+, 9/9 Richardson scale
3/05 Chemo Ad/Cytox
6/05 Weekly Taxol/Herceptin
Continued Herceptin for 1yr
9/05 33 rads
5/06 Hyst. and bilat oph. due to susp. cyst on ovary
Tamox then Arimidex now Femara
NED scans every 6 months
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06-26-2008, 12:29 PM
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#6
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Just chiming in..................Praise God for an ALMOST 3 year NED. The official NED date is July 28, 2008.
Thanks Donna for this post.....yes, you are right, along with the sadness there is also happiness. Sometimes that happiness is hard to pull up though......posts like this offer hope and remind each of us that for whatever reason some of us are NED and some are not. We are united though - with once cause - to support and love each other through it all..............whatever that "through it all" might be. I look at this life as a journey and for whatever reason our journey took the direction it took. We've been blessed with one another to love and support - learn from one another and share God's love with one another.
Just earlier while I was praying and thanking God for all His mercies shown me.....I stop and tell Him how sorry I am for those times I doubt and question Him because it so often doesn't make sense to me and my heart is often saddened by someones suffering. I ask God "Why so many good people suffer" .....but in that same breath I know our Loving God knows the whole plan...the whole picture....so I can only sit by and trust His plan....BELIEVE and love while it is still called "today."
We're all in it together - cancer or no cancer....NED or NO NED....it's a journey until the journey ends. While on the journey we take what comes our way and learn from it, grow from it and support and help each other.
How blessed we are...................
Thanks Donna...awesome post.
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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06-26-2008, 01:13 PM
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#7
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Donna, I couldn't agree with you more. This thread is SO NEEDED. When I was first DX all I did is search in vain for people that did not recur. My path report showed a very bad prognosis all over it. My onc gave me no hope. The only hope I found at all was the women on this board that hadn't recurred & remained NED. So this is a great idea.
My signature says it all but I am stage IIIA with 5 positive nodes. I could not have radiation and I recieved TCH and finished my yr of herceptin. I am 2 yrs & 5 months out and NED.
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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06-26-2008, 01:48 PM
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#8
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Senior Member
Join Date: Sep 2006
Location: Savannah, Georgia
Posts: 301
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Hi Donna,
What a wonderful idea for a thread. I am ashamed to say that I have been very affected myself by the many difficult losses and have dealt with it in the not so healthy way of avoidance. I too remember spending HOURS looking on this site for anyone with similar stats that had not recurred. Not only was I given so much hope by those with no recurrences, but especially from those who had, and were doing wonderfully and had been for many many years.
I just celebrated my two year mark also (May 17), and find it hard to believe at times that I am still here. I have never loved life as much as I do now and can't begin to explain to those around me (who have not had a cancer dx) how my life has changed for the better.
Love, Kelly
__________________
dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED
"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."
-Eleanor Roosevelt
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06-26-2008, 02:19 PM
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#9
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Hi everyone,
I celebrated three years out in May, 08.
Best,
karen
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06-26-2008, 03:07 PM
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#10
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Senior Member
Join Date: Jan 2006
Location: New Jersey
Posts: 46
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Hello,
I am 4.5 years NED and plan to have plenty more!
Best and good wishes to everyone,
Monica
__________________
Monica
Dx Nov 2003 HER2+++, ER+, PR+
1.7 cm. left breast, Grade 3, Two nodes out of six, stage IIA
Mastectomy right side
Lumpectomy left side
4 A/C, 4 Taxol plus 49 weeks herceptin
Radiation on left side
No tamoxifen or other hormonal drugs
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06-26-2008, 03:46 PM
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#11
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Hi Donna
I have never come to this site looking for reassurance that I am going to
survive this crappy disease. The deaths sadden me and hurt me but I
am never shocked. There are two realities for me: one is that many
women die from breast cancer and the other is that many people
survive breast cancer.
After the losses that we suffered this past year, I am sure there
are members who need to see and hear about all of us who have not
recurred.... this is a very good idea for a thread, especially the timing.
I was dx. in August, 2005. So I am very, very close to 3 YEARS NED.
I too will have to change my signature by adding a year and another
exclamation mark.
Thanks for starting this thread Donna - great idea.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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06-26-2008, 04:07 PM
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#12
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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I'm with Pink Girl - I am a realist. I too recognize that woman still die from this horrible disease, BUT more and more woman are surviving it. As long as progress with newer and better drugs continues to be made at the rate it is now (even faster please!), the number of woman who can say they are NED will continue to climb!
Onward and upward!
NED 2 years, 6 months!
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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06-26-2008, 04:13 PM
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#13
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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I'm a realist too but having said that I just got the results of my three year out mammo today and it's clear!!!
I've lost three friends to this disease since I was dx so although I'm thrilled at this news I know a recurrance can hit anytime.
But for today,I'm happy!
__________________
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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06-26-2008, 06:03 PM
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#14
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Diagnosed stage IV, almost 2-1/2 years ago. Scans have been clean ever since. I get my scans again in July, so praying for more good news..sherryg693
__________________
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!
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06-26-2008, 06:28 PM
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#15
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Getting Anchored In Your Essence
Just wanted to chime in, here. I did recur (orig dx in 95 w/ stage IV) -- before we all knew about her2 and herceptin.
I was lucky in that I recurred, into the liver, in august of '98. BECAUSE HERCEPTIN WAS FAST-TRACKED BY THE FDA AND MADE AVAILABLE TO ALL MET BCrs September 28, 1998!!!
And here I am. Just had my every 6 mnth scans and my annual mammo/sono -- and I AM STABLE!!! Sticking w/my Vitamin H ev 3 wks. Joyful, feeling blessed, deeply grateful.
In '95 I had no grandchildren. 1 married daughter. I lived to see my baby married. And to greet 5 new Souls to this world! Life is sweet. Stay strong, brave and determined... Be well. Stay positive and connected to your Spirit at all times. It will guide you.
Always sending loving energy to y'all...
Andi 
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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06-26-2008, 06:38 PM
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#16
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Although my prayers are with everyone that they won't reoccur but I honestly believe that all is not lost if you do.
After being diagnosed as Stage IV in October 2007 I am pleased to say that I have been NED after only 3 cycles of Taxotere + Herceptin. I JUST returned from my check up and have now been NED for 5 months.
I plan to just keep on adding up the months!!!
I also GREATLY appreciate the sisters on this site that are participating in the DM1 trial and share so freely about their experiences. Their first hand knowledge give me further hope that if things change, there are a lot of options remaining.
Thanks to everyone on this site for being so inspiring!!
__________________
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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06-26-2008, 06:59 PM
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#17
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Senior Member
Join Date: Jan 2007
Posts: 144
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I'm still here too!
I am officially 15 months out and doing great!! Living and loving a life I did not think I would get to see.
Thank God for this site and the modern marvel of science.
I have been trying to log in, but have not had much chance.
I am here to say, keep going just like the Energizer Bunny.
We have all taken a licking, but we keep on ticking!
Emelie
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06-26-2008, 08:11 PM
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#18
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Senior Member
Join Date: Sep 2005
Posts: 161
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3 years, 8 months, all is well.....
__________________
Diag. Oct. 2004 age 54 left breast
Stage 1 grade 3; 6mm IDC; unknown amount of DCIS
with comedo necrosis; node neg.
Nottingham Grade 7/9
ER 91% PR 62%; Her2 3.6 by ICH; KI-67 35%
Nov 2004 Lumpectomy; SNB failed so had
full axillary clearance;
Dec 2004 2nd lumpy for clean DCIS margins.
Jan/Feb 2005 4 A/C dose dense;
33 rads finished 6/2005;
Began 5 years Arimidex in 6/2005
No Herceptin
9/2007 Quit Arimidex due to severe side effects.
NED
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06-26-2008, 08:14 PM
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#19
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Senior Member
Join Date: May 2006
Posts: 143
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I agree. I know how much I clung to positive stories when I was first dx, and there are a lot of us out there.
I'm over three years from a really knarly diagnosis - very large tumor, a pos node after chemo, 9/9, hormone minus, high high scores on all the bad prognostic factors.
Over 3 years later, I'm fit and busy. My twins have survived (thrived) their first year of college and all is well.
Linda
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06-26-2008, 09:37 PM
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#20
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Senior Member
Join Date: May 2006
Posts: 3,142
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All those dancing with NED
Nine and half years after my original diagnosis I am very grateful to be still alive and kicking and getting older.
One year after my diagnosis a surgeon told me I had six months to live. He even wrote it in a letter to my oncologist. I remember thinking "That is not going to happen to me" when the surgeon was still talking. Thank goodness it didn't happen.
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