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02-01-2010, 05:00 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Scanxiety denied...license to breathe renewed
Dear friends,
This has been such a horrible couple of months with terrible losses...and despite feeling well I couldn't help but feel a sense of dread about my 4-month scans. I know we're all in serious need of some good news...
so I will share some.
I haven't seen the reports yet from my Pet/CT and Echo last week, but there was a message on my answering machine at home that used the words "scans" and "fabulous" in the same sentence...and that is enough for me for now!
The TDM1 is still doing the job!...and my focus is to try and stay healthy so I can continue on the study. Been having some issues with platelets lately, and my last labs were all over the place on the liver functions (but that could have been due to being in Las Vegas for the 3 days prior, including a few cocktails). Back to the beet juice and carrot salad for me.
So it's all praise to God, I feel so blessed...
and
I pray that approval and access for TDM1 will be accelerated quickly...
__________________
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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02-01-2010, 05:08 PM
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#2
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: Scanxiety denied...license to breathe renewed
Fabulous indeed!!! You have fought long and hard for this - I am so happy for you.
Thanks for sharing your good news, we needed that!!
__________________
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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02-01-2010, 06:10 PM
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#3
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Senior Member
Join Date: Sep 2005
Posts: 556
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Re: Scanxiety denied...license to breathe renewed
Thank you Chrisy,
It is so difficult with this disease and small kids. I take a long breath whenever I read some good news. I keep searching for the the options, is there a something I can do to be healthy? Please keep giving such news.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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02-01-2010, 06:28 PM
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#4
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: Scanxiety denied...license to breathe renewed
Congratulations, Chrisy! Yes, good news is so darn good to hear! Yea for you!
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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02-01-2010, 07:56 PM
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#5
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Re: Scanxiety denied...license to breathe renewed
I signed on just to see if you posted. I'm so very glad you got the news we were all praying for.
I will be the one holding her breath tomorrow. CT scan at noon.
Tonya
__________________
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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02-01-2010, 07:56 PM
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#6
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: Scanxiety denied...license to breathe renewed
Chris, you keep me believing in the miracle of TDM1 for everyone! Thank you for sharing. Best wishes, 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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02-01-2010, 08:21 PM
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#7
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Scanxiety denied...license to breathe renewed
Thanks for sharing your good news, Chrisy.
We certainly needed some with the losses here lately.
Tonya - good luck tomorrow.
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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02-01-2010, 08:23 PM
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#8
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Re: Scanxiety denied...license to breathe renewed
Breathing is good I hear. I think it was the trip to Vegas that helped the TDM1 work even better.
You go girl... I am so thrilled to hear your news!
Love, Hope, Peace, Carolyn
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02-01-2010, 08:24 PM
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#9
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Scanxiety denied...license to breathe renewed
Chrisy,
I am grateful for your news.
K
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02-01-2010, 10:59 PM
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#10
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Scanxiety denied...license to breathe renewed
Chrisy, Such TERRIFIC news! I'm going to get up and do that happy dance...I'm so excited for you. WOOO HOOO!
Nothing like having fun in Vegas and coming home to wonderful news like that. I'm so glad you shared this with us. I can't wait till they make TDM1 available to all that need it. I can imagine the relief you felt when you heard that message. So nice to come check the board & hear some REALLY good news for a change. 
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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02-01-2010, 11:08 PM
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#11
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Scanxiety denied...license to breathe renewed
Chris,
Thanks for sharing the 'fabulous' news. Here's a toast of 'beet juice' to you!
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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02-02-2010, 12:12 AM
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#12
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Senior Member
Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
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Re: Scanxiety denied...license to breathe renewed
Chris,
Thanks so much for sharing, I am so happy to hear such wonderful news. You have made my day!!
Alice
__________________
9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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02-02-2010, 04:43 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Scanxiety denied...license to breathe renewed
Chrisy - Fabulous! Music to my ears. So good to hear the tdm1 is working so well for you. I agree the sooner we can all get it the better. I hope you go celebrate in true Santa Cruz fashion which requires something truly funky and outrageous. Forget 'what happens in vegas stays in vegas" .... it should be 'what happens in sc! Can't wait to get back there.
I have scans - CT/Pet, echo, & ct of my sinuses coming up on 2/16. I sure hope to hear your "f" word about mine too. Pam
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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02-02-2010, 04:48 AM
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#14
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Scanxiety denied...license to breathe renewed
Brilliant news! We all need a bit of it at the moment as so many terrible things seem to have happened together. Praying for you gals to get approval of T-DM1 soon then maybe, just maybe we might get it in England too!
Ellie
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02-02-2010, 05:52 AM
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#15
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: Scanxiety denied...license to breathe renewed
Chrisy.....Good news indeed!!!
Thank you for posting such wonderful results. It IS in inspiration for those of us waiting in the wings.
Glad that you were able to get away prior to the scan. Now....another trip is in order to CELEBRATE!!!!
Please know that you have personal cheering section.
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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02-02-2010, 07:28 AM
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#16
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Re: Scanxiety denied...license to breathe renewed
That's wonderful. Sorry you can't celebrate with champagne. Squirt a little club soda into the beet juice...gag.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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02-02-2010, 07:37 AM
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#17
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: Scanxiety denied...license to breathe renewed
Chrisy, I'm so glad you have good news! We all wait with you for those scan results.
Barb A.
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02-02-2010, 07:42 AM
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#18
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Scanxiety denied...license to breathe renewed
Absolutely Fabulous!
Love
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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02-02-2010, 09:01 AM
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#19
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Re: Scanxiety denied...license to breathe renewed
So happy to read your good news, Chrisy! Keep up the fight and keep the good news coming...
hugs,
shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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02-02-2010, 12:14 PM
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#20
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Scanxiety denied...license to breathe renewed
This is fabulous news. I have my fingers crossed for you.
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