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Old 01-03-2012, 08:42 PM   #1
alicem
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Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
Re: Update on the Journey for NED

Oh Sheila,

I'm so sorry to hear this news. As Brenda would say . . . crap on a crapstick!! I think you know that you are my hero, and if anyone is deserving of a cure, it is you! I hope that your doctors are able to come up with a good option that will not only clear up your pain, but will zap those #%*^)&%!%@# cancer cells.

Please keep us posted as to how you are doing. Sending you warm hugs and keeping you in my thoughts and prayers.

Love, 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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Old 01-04-2012, 06:12 AM   #2
Becky
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Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
Re: Update on the Journey for NED

Dear Sheila

I am sorry things aren't working right now. Consider returning to something that did in the past such as Taxol (or Taxotere) with Herceptin and Tykerb - will they do that combo or any combo with Herceptin and Tykerb together. Just thinking out loud on what can stabilize you until you can get TDM1 or a trial with something else.

You are one of the strongest women I have ever met and a true warrior. My thoughts and prayers are with you.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 01-04-2012, 06:17 AM   #3
caya
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Join Date: Jan 2007
Location: Thornhill, Ontario Canada
Posts: 2,320
Re: Update on the Journey for NED

Dear Sheila,

Please keep your spirits up, I'm hoping your docs will find the right magic combo for you. You are one of the bravest, upbeat, women I "know."

Also hoping 2012 is the year of the cure!!

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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