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01-31-2008, 10:18 PM
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#1
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Senior Member
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
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Yeah for me
I completed my one year of Herceptin the last week of November, 2007. I recently had a brain MRI and CT Scan of chest, abdomen and pelvis. Although I had some new non-cancer findings, I am currently considered NED ! 
I was happy to say the least, but my family didn't show me any reaction. I was hoping my husband would want to celebrate by cheering, taking me out to dinner, or something, but  I really didn't get any reaction.
It has been a long and difficult 1 1/2 year since my original dx. I know some others on this site have experienced the lack of enthusiasm or reaction of excitment from their family, but I know all of you know what an accomplishment this is and what this news really means. |
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01-31-2008, 11:45 PM
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#2
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Senior Member
Join Date: May 2006
Posts: 143
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Congratulations on your clean scans. I know what that means. WE know what that means.
Those near and dear to us can't possibly understand what this is like (just like we don't always understand what they're going through...)
You must be so relieved. Onward... You're back in the thick of life...
Linda
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01-31-2008, 11:54 PM
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#3
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Joanne, First of all I am SO SORRY no one acknowledged the importance of your scan results. NED is BIG NEWS...I'm not sure what planet "our" families are from at times? lol I experienced that when I completed herceptin, and then again recently when it was my two yr canceversary. Not one peep out of anyone...just no big deal. It was JUST another day. I have a really good idea how you are feeling. They just don't get *it*!  They seem to think its all over now so you just need to forget about it and move on. (Don't we wish.)
That being said...I get *it* and this entire board gets *it*. Let me say BIG CONGRATULATION'S to you on completing your herceptin and your NED status!  You have been through SO MUCH and its time you do something really special for yourself. Even if you family doesn't understand...make sure you celebrate and go buy yourself something you've been wanting. You deserve it. Its been no picnic to get where your at, and I say "WAY TO GO GIRL"! Here's to another 40 plus years with NED by your side. Again...congratulations. Whooo Hoooo!
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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02-01-2008, 07:11 AM
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#4
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Hi Joanne
Yeah for you!!! Congrats on finishing treatments
and the clear scans. As Chelee said, we all "get it"
here. Way to go........
Attachment 285
__________________
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
Last edited by PinkGirl; 03-29-2008 at 07:31 AM..
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02-01-2008, 07:22 AM
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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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I'm here leaping for joy and celebrating with you! I'm picturing tons of balloons and confetti and some fun food to munch on! We're all so excited for you and send you hugs and laughter and "way to go, girl"s!!!!
__________________
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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02-01-2008, 07:35 AM
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#6
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Yes Joanne WE certainly "get it" here - Thanks for sharing, good for you.
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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02-01-2008, 07:51 AM
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#7
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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AWESOME news Joanne...
I'm sorry for the "non reaction", but always remember...WE LOVE YOU!!!! Congratulations, now go TREAT YOURSELF (I got a day package at the day spa-ah-ah-ah-ah). Take care and God bless...how's the weather where YOU are? We got LOTS of snow over here by Lake Michigan.
Rhonda
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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02-01-2008, 09:26 AM
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#8
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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You bet we do "get it" Joanne. Only someone who has walked in our shoes could truly "get it!" I'm sure your family is very happy for you BUT they've probably let it go a long time ago. I mean, geez, you've "done the work" so it's over now, right????? Haha! Ya, right!!!! It's NOT that easy!!! Although it gets easier with time, the "letting it go" completely isn't possible.
Sending you HUGE CONGRATULATIONS HUGS and to say I KNOW how happy you are. It's an awesome feeling to know we are NED!!!
Love and Peace to you Joanne,
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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02-01-2008, 09:35 AM
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#9
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Same way here. You are back doing everything so its over. They don't
get it like we do. Celebrate we get it. One year,Two years, forever we
get it.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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02-01-2008, 09:51 AM
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#10
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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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I sure they are happy but maybe they thinking that was a normal good news only we know is no a normal good news is a great news so just celebrate with your sister in this site then ...I' happy for you ..I know what means this ...so thanks for help my day to be nice ...cer
__________________
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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02-01-2008, 10:08 AM
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#11
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Good for you. It is wonderful news.
__________________
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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02-01-2008, 10:26 AM
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#12
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 3,000
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Smiling...
 Here is to dancing with NED, Congratulations!! This is great news and I am so sorry you did not get the reactions you expected from home. Please remember this is your second home and WE get it, Sweetie. And make sure you do something special for yourself because you deserve it. Thanks for keeping us posted with you, I have missed you so much>>Believe51
PS: If this was Mighty Oak I promise I would be 'yelling it out on a cliff to the entire state', only this time I know I would not feel like jumping!! LOL!!
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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02-01-2008, 10:26 AM
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#13
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Well, I will certainly give you a reaction WAY TO GO!! It is such a relief to get those clear scans. I remember my husband giving the same reaction when I was told I was NED, he was in the room with me when the Oncologist told us. I actually though I saw him frown. Maybe it was just my imagination but I had it in my head that he didn't care if I died, which of course isn't true. Husband can be just plain weird at times. sherryg
__________________
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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02-01-2008, 10:36 AM
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#14
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Senior Member
Join Date: Jan 2008
Location: Carmel, Indiana
Posts: 98
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Joanne,
You're right - people don't get it! We do!!! But congratulations and yeah for you!!!!!!!!!
Beth
__________________
DX 9-19-07 at age 40
DCIS, Inv. Duct. Car. 3 cm
Positive lymph node biopsy
Er+Pr+Her+++
Carboplatin/Taxotere/Herceptin
10-1-07 -- 1-16-08
Herceptin every 3 weeks until 9/24/08
Lump. and node dissection 2-12-08
BRCA1 and 2 negative
30 rads finished 4-23-08
oophorectomy 5-6-08
Femara started 5/25/08
Zometa for osteoporosis every 6 mo. started 9-24-08
Married 16 years!
3 kids - daughter (10), twin sons (7)
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02-01-2008, 12:23 PM
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#15
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Senior Member
Join Date: Jan 2007
Location: Massachusetts
Posts: 82
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Congratulations! Wishing you many more years of NED! (I am a few months behind you. I guess I'll start planning my own celebration.)
__________________
IDC Stage IIIA
Diagnosed Nov 2006 (routine mammogram), age 51
Lumpectomy, lymph node dissection Dec 2006
3 cm tumor, 8 cancerous lymph nodes
Grade 3, ER/PR -, HER-2/neu +++ (by FISH, average 20 copies per cell)
A/C x 4, Taxol x 12, Herceptin x 47 weeks
35 radiation treatments
Completed treatment on April 3, 2008
Chest port removed October 2009
11 years since diagnosis NED
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02-01-2008, 02:10 PM
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#16
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Joanne,
CONGRATULATIONS! It's a huge milestone, and you can't help but feel hurt that those who love you didn't make a big deal about it. But it is true that sometimes our families just expect that all is going to turn out fine, and don't realize the anxiety we go through. It's not too late for you to take you and your husband out for a special celebration, let him know that it IS a big deal to you, and CELEBRATE!!! I recommend you take the bull by the horns here so you don't harbor resentment towards you husband, he just doesn't realize you need to do this for yourself.
<Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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02-01-2008, 03:40 PM
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#17
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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I agree with Lolly. Our family and friends want everything to be ok, and after treatment is done, they sometimes express that as whew, that's over. They don't understand the anxiety because they believe it to be "taken care of" and are not thinking in terms of might it recur.
But that doesn't mean you can't celebrate!
__________________
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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02-01-2008, 04:40 PM
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#18
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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So excited to hear that you are NED. I am sorry that your family is not very responsive. Grab a friend and go celebrate and/or take the time to tell your family how you feel. Maybe they just need time to absorb the good news.
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02-01-2008, 05:14 PM
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#19
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Senior Member
Join Date: Sep 2005
Posts: 77
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Joanne,
Where do I begin...????
Sometimes husbands and families and friends just DO NOT GET IT.....
I had a mammo yesterday and all is well... I'm a 4 year survivor... so I sent out an email to friends and siblings and had a wonderful response. They are truly celebrating with me. My sister-in-law called me today she was so pleased to hear the news. One of my sisters emailed me and said " great" and then went on this diatribe about the problems she's been having with " heartburn" lately.. oh, my gosh....
2 of my 3 children were happy to hear the results as the 3rd is in his own world ....Celebrate? Are you kidding ? they are soooooo busy with their own lives And lastly, but by no means leastly, my husband's reaction was ..... " How did it go ??" Answer... "it was fine .. no change from the last one in June"...... his answer'" Oh, good" followed by , " did you get the mail on the way in ?" How do respond to that ??? Who gives a ^$#)(*&^#$ about the mail ?? I'm OK ... get it.
SO, I had a few glasses of wine -- he joined me with one.... though I'm reading lately that alcohol will increase your risk of reoccurance but I said to h--- with it... I'm celebrating.
So my friend , Joanne S... do I get it ??yes, I do and CONGRATULATIONS to many more good reports. Take care and I DO care. I'm sure your family does too, but sometimes they have a real weird way of showing it...
Carol
p.s.. My daughter, who is a nurse, has often said," I can't believe how you breezed through the surgeries, and chemo and radiation.... you're so tough and strong" and perhaps that's my fault for the persona that I present... oh well, I am who I am and that's my story
Important note... KEEP YOUR SENSE OF HUMOR
per example.... picture this... you and I are out on my street tonight doing some cool boogie dancing and everyone is honking their horns....celebrating with us...
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02-01-2008, 05:30 PM
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#20
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Senior Member
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
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All of You ! ! !
THANK YOU SO MUCH!
I have uncontrollable tears of joy right now.
Virtual  and  to all my HER2 Sisters ! Joanne
Rhonda,
We're pretty lucky on the east side of Michigan --- only 3-4 inches last night and a dusting today !   Jo
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