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01-31-2007, 01:11 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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I can't believe it!! A break ...
Well, group -
The news for me was ALL good.
I had a PET/CT scan last week and had markers including HER2 serum drawn the week before when I got my 3-week Herceptin dose.
Her2 serum was down from the last one of 8.9 to 7.3. Other markers steady in low normal range.
Scan showed NED.
With that news I requested an Herceptin BREAK of 3-4 months. I have been taking the drug now for over 5 years. It has been a Godsend to me (I have already thanked Dr. Slamon and his associate in person!). My oncologist has agreed to my request with a marker check at 6 weeks when I have my port flush.
So, I am not completely unchained from the cancer center, but have a newfound sense of getting a little of my life back after being stage IV for over 5 years.
Since starting Herceptin (with Taxol and Navelbine weekly till NED) over 5 years ago, I have never had a new tumor with the exception of the two in my brain. So, I can say that however my cells are configured, it was with Herceptin in mind!
I am still tired and need a lot of sleep after all my head surgeries last year, but I will know what (if any) side effects I get from the Herceptin, which has been pretty easy on me.
Also, onc said NO MUGA for now, since I am off Herceptin and my last one was good.
So, for many of you who are ending their Herceptin round, I am sure you will have a cancer-free future, as this drug can work wonders! Even in the likes of ME - who was given a poor chance of surviving my onslaught of mets.
__________________
"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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01-31-2007, 01:50 PM
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#2
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Oh Steph,
I couldn't be happier for you. What a joyous day in your life AND what an inspiration to us all.
God's continued blessings to you,
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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01-31-2007, 02:20 PM
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#3
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Wow
Congratulations Steph I'm really pleased for you,especially getting through five years!
I'm terrified of a recurrance and am having a bone scan this Friday for back pain but your message gave me hope that even if and when I get bad news there is still hope of surviving this.
Thanks for sharing and enjoy the feeling 
Tricia
__________________
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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01-31-2007, 02:26 PM
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#4
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Yay!! Such great news!! Enjoy your break from herceptin!! You deserve it! I am enjoying my break, too!!
Hugs and Prayers,
Lexi
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01-31-2007, 02:28 PM
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#5
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Senior Member
Join Date: Sep 2006
Location: Savannah, Georgia
Posts: 301
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Steph,
I am SO happy that you received such good news - You really do have a lot to be proud of. Herceptin does work wonders, but it takes a very strong person to "fight the fight" and do so well. Congratulations and thank you for sharing your news with us!!!
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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01-31-2007, 02:42 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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Awesome news!
Steph:
It is so encouraging to read posts such as yours. Thank you for sharing the good news.
__________________
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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01-31-2007, 02:52 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Los Angeles
Posts: 430
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Steph,
GOGOGOGOGOGOGO GIRL!!!!
I'm so very happy for you. I wish I had a camera- because I'm smiling for you
XOXOXO
MCS ( maria)
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01-31-2007, 02:54 PM
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#8
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Incredible News!!!
Cheers to you and best wishes for an outrageous break!!!
__________________
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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01-31-2007, 03:17 PM
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#9
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Steph,
What wonderful news! Congratulations! I know you must be lookng forward to no chemo in your life after such a long haul. You are an inspiration.
__________________
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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01-31-2007, 03:39 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Due for some fun in the sun
Darn tootin, StephN -- take a good break -- from the Herceptin! And get out there and get every bit of sunshine and make up for the northern clouds:
http://www.bbc.co.uk/science/hottopi...benefits.shtml
One of the most interesting things about sunshine is that it works on the pineal gland to produce the tryptamines, like melatonin, which in itself seems to offer some protections against cancers...
Take everything off, go soak up the sun, and enjoy being alive!
Naturally,
AlaskaAngel |
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01-31-2007, 03:44 PM
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#11
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Steph, I am so happy for you, you deserve this break. You are a shining example of how we have to hang in there and percivere. Keep up the good news and good results.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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01-31-2007, 03:56 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: Lumberton, Mississippi
Posts: 118
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Congratulations Steph. I am so happy for you. Ejoy the next few months.
Linda
__________________
Diagnosed 12/23/04
Biopsy 12/28/04
Lumpectomy 1/04/05
IDC, ER-PR-, HER2Neu+++
7mm tumor, Stage 1, Grade 3
6 CAF's
38 Rads
Finished 10/05
"Worry looks around. Sorry looks back. Faith looks up."
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01-31-2007, 04:13 PM
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#13
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Awesome!
Stephanie: I'm so glad to hear such good news! It provides so much hope for all of us who are battling cancer. I hope I can one day say I"ll be off Herceptin-indefinitely,- that will be the day. Wonderful news, wonderful......
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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01-31-2007, 04:29 PM
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#14
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Senior Member
Join Date: Oct 2005
Location: Saratoga Springs New York
Posts: 136
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enjoy
I'm happy for you Steph. Your posts have always been such an inspiration to me. I have learned alot from you. Enjoy your time away from Herceptin. I hope everything goes your way from here on out. Sally
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01-31-2007, 04:37 PM
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#15
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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What Great News!!!
Hi Steph,
This is such great news. I'm glad that oncologists are beginning to give some thought to having a a break from Herceptin when a patient is NED for a significant period of time.
Keep us informed and I hope you have the opportunity to get away or take a trip.
Best wishes,
Barbara
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01-31-2007, 04:40 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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WOW! That's terrific news - and you certainly deserve a break! You are always an inspiration to me, and now you've raised the bar again! Enjoy your Herceptin holiday!
chris
__________________
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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01-31-2007, 04:55 PM
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#17
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Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
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well done steph!
Great news. You have been fighting a long time and deserve a break. I just had my first her 2 serum blood test (while I was visiting my sister in London) and it was 7.6; this was 4 weeks after a dose of herceptin. I have stretched out my herceptin to 4 and 6 weeks occasionally but just had to have a reloading dose since I had a break of 7 weeks while overseas. I want to have a 3 month break soon. I have been on herceptin for 17 months and have been NED for most of that.
Cheers
jackie (down under)
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01-31-2007, 04:55 PM
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#18
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Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
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Great news Steph! You are an inspiration. Enjoy your herceptin holiday!
__________________
Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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01-31-2007, 05:47 PM
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#19
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Senior Member
Join Date: Jan 2007
Posts: 138
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This news makes my heart sing. Congratulations!!!
Karen
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01-31-2007, 05:59 PM
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#20
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Senior Member
Join Date: Aug 2006
Posts: 492
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Yeah!! I have been waiting for your PET post- great news!! Congratulations- it couldn't have happened to a nicer gal!
__________________
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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