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04-29-2014, 03:05 PM
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#1
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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6 years April 22
Just dropped in to say I hit my 6 years! I am getting my Herceptin right now. Life is good. I helped my daugher pick out her wedding dress last night. Enjoying each day.
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!
1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."
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04-29-2014, 04:38 PM
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#2
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Senior Member
Join Date: Feb 2014
Location: California
Posts: 439
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Re: 6 years April 22
Congrats to you on the 6 years. Nice to hear from somebody with ibc that has hit this 6 years. From my profile you can see I have ibc as well. I am currently finishing up the 12 wks of TH . My mass if that's what u want to call it No lump at Dx was a 5cmx5cm. Ct at time was was clear minus benign 3mm nodule on lung and 2 inflamed lymph nodes . My presentation at time of Dx was a quarter size pink on breast, thickness and heaviness of breast along with itching and minor pull on nipple. I won't know until surgery path report true stage3 a, b or c. Also mass / thickness total gone! Pinkish color gone with first AC tx. Here is to hoping I am NED . Here is to hoping you will celebrate many more years of no cancer!!
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]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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04-29-2014, 05:00 PM
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#3
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Re: 6 years April 22
Hi, Glad you are have such a great response to treatment. I see you have aport , I still have mine used it today for H. Herceptin is saving many lives. Sounds like you are getting great treatment. Sending Blessings
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!
1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."
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04-29-2014, 05:20 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: 6 years April 22
Yippee for you Alice and give your daughter (who I met when you two came to ASCO) a big congratulations. My daughter got married almost two years ago. Happy Times.
__________________
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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04-29-2014, 05:25 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: 6 years April 22
Wonderful milestone Alice!
Hurray for pricing out that wedding dress to. I helped my future daughter-in-law pick out her dress just a month ago!
Wonderful that we are here to enjoy the festivities!
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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04-29-2014, 06:12 PM
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#6
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Senior Member
Join Date: Jul 2013
Location: Katonah,New York
Posts: 228
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Re: 6 years April 22
Great story! Congratulations
__________________
3/11/13- normal mammo and US
4/30/13 Found pea sized lump while showering
5/10/13 core bx
5/15/13 dx IDC 1CM,
5/20/13 BRAC 1&2 neg
5/28/13 lumpectomy and SNB, ER/PR/Her-2+, Nodes neg,positive margins
6/13/13 revision of margins . Now clear
6/26/13 first TCH
Chemo Ninja~kutaki Zika Zukuchiri
10/18/13-Bx of calcification-neg whew
11/7/13 Started Radiation.
01/2014- Started Tamoxifen
06/09/14-Steriotactic BX left breast calcification-Benign
06/18/2014-completed one year of Herceptin!
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04-29-2014, 06:27 PM
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#7
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: 6 years April 22
Great to see you checking in with great news - all around! You and daughter. I recall that she was very cute and had some smarts to go with it. Wishing her all the happiness in years to come.
__________________
"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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04-29-2014, 06:40 PM
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#8
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Senior Member
Join Date: Apr 2014
Posts: 47
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Re: 6 years April 22
Congratulations you have much to live for. I rejoice and celebrate with you in this good news. Weddings are such an affirmation of the joy of living. I am just beginning the journey it has been a rocky start, but greater is he that is in me than he that is in the world. I do not trust in any strength of my own, but wholly lean on the power of the comforter within. May you be blessed with many years of joyous living and loving as your family enlarges.
__________________
HX: left breast IDC T1a node negative 1999. Lumpectomy, sentinel node biopsy, radiation therapy, 5 years of Tamoxifen, 1 year of Femara discontinued due to intolerance.
3/21/14 almost 15 years later abnormal mammogram 2 cm right breast mass deep in the breast by the chest wall, mammogram last year was normal. Ultra sound confirmed highly suspicious for malignancy.
3/26/14 needle biopsy proven IDC grade 3, ER+ PR+ Ki67 75%, Her 2 in process.
3/31/14 Consult with Breast Surgeon. Bilateral mastectomy discussed along with referral to plastic surgeon for planned surgery with reconstruction.
4/4/14 Her 2 +. My Oncologist explained that this is a new primary and unlike before in 1999 very aggressive. Surgery put on hold.
BRCA testing done. Results were negative for gene mutation.
4/7/14 PET CT for staging for possible neoadjuvant treatment. Results indicate 1.3 cm tumor and a positive lymph node.
4/9/14 lymph node biopsy. Pathology documented metastasis.
4/14/14 cardiac echo result Ejection Fraction 60%
4/16/14 Port placement
4/17/14 1st chemotherapy treatment
with Herceptin, Perjeta, taxotere and carboplatin.
4/18/14 1st treatment done yesterday with no events whatsoever!
4/23-4/25 Dreaded D hit really hard.
Daily visits to the Oncologists office for hydration and neupogen injections.
4/24/14 Started on Cipro for seriously low WBC count.
4/25/14 Results of blood count at MD office so low (ANC 0.08) I am hospitalized in isolation for neutropenic precautions. One treatment wiped out my immune system!
4/28/14 home recovering. 4/30/14 MD's new plan of treatment: reduced dose weekly taxotere, carboplatin, Herceptin with Perjeta every third week.
5/7/14 Cardiac echo > than 60% and the breast ultra sound showed 2 cm lymph node now only .5 cm. mass in breast is unable to be palpated!! treatment is a go.
5/9/14 Partial 2nd treatment, full dose Herceptin and Perjeta 1/3 dose taxotere and carboplatin.
5/13/14 lab check and fluid infusion.
5/14/14 Appointment with my Oncologist. The lab results are great and the dreaded "D" not as severe as 1st round. Then I mention that my left calf and foot are swollen and painful to the point of limping, could be the drugs but to be safe I had a venous doppler study. I have a clot in my left leg. It wasn't totally occluding the vessel and she really didn't want me in the hospital. Now I will be on Arixtra shots in my tummy till the chemo is complete sometime in August, 2014
5/16/14 continuation of 2nd treatment taxotere carboplatin only.
5/23/14 continuation of 2nd
treatment taxotere, carboplatin only
Amazingly no horrid "D" or nausea!!
5/28/14 visit with the oncologist, great news she can no longer feel a breast mass or the malignant lymph node Yippee!!
5/30/14 started 3rd chemotherapy cycle had full dose Heceptin, Perjeta ans 1/3 dose taxotere and carboplatin.
6/6/14 next dose of taxotere carboplatin for 3rd cycle
6/13/14 last dose taxotere carboplatin 3rd cycle
6/16/14 I am scheduled again for another breast ultrasound to see extent of response to chemotherapy. results will direct continued chemotherapy of directly to surgery!
6/20/14 tentative 4th chemotherapy cycle
"Zumokato Toku" is my Chemo Ninja Cancer Assassin name!
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04-29-2014, 08:02 PM
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#9
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: 6 years April 22
So wonderful ALWAYS to hear positive, uplifting news! It is such a morale boost for me, THANK YOU!!
CA
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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04-30-2014, 12:46 AM
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#10
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Senior Member
Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 494
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Re: 6 years April 22
Great news indeed! I hope to follow your example.
Here's to Herceptin!
Best wishes.... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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04-30-2014, 11:31 AM
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#11
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: 6 years April 22
congrats on your 6 yr milestone AND the upcoming nuptials. Enjoy.
__________________
Linda
Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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04-30-2014, 11:35 AM
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#12
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: 6 years April 22
Great news Alice - enjoy that wedding!!
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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04-30-2014, 09:01 PM
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#13
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Re: 6 years April 22
Congratulations on #6 Anniverary, Alice. So happy for you and for your daughter's upcoming wedding.
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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04-30-2014, 10:53 PM
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#14
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: 6 years April 22
Isn't life Grand! Gods blessings to you and your family!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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