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Old 07-12-2010, 08:54 AM   #21
Renee Hithe
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Thank all you ladies for sharing your storiess it is certainly a blessing to have others who have gone through the fire and are leaving their foot prints for me to follow and learn from thank you again for your guts to be part of trials and so on, this has allowed ladies like me to benefit from your guts to survive and thrive. renee
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Old 07-12-2010, 09:58 AM   #22
Leslie304
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Congratulations Renee! Five years and many, many more! I hope to post the same report ..... in four more years
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2009
3-15 Age 48 -found lump
Dx 4/15/09: IBC Stage III w/extensive lymph node involvement HER2+++
5/1/09: Adria/Cytoxan for x 3-no response
6/12/09: Taxol/Herceptin for 1 tx -no response
6/24/09: added Carboplatin to T/H x 3 - no response
7/09 -added F5U -no response
7/29/09: Herceptin/Xeloda/Tykerb no response
8-18-09: 2nd opinion at MDA - IDC not IBC! First Onc disagrees,
BRCA 1/2 Neg
8-19-09: continue on Herceptin/Xeloda/Tykerb-slight response
9-24-09 MRM right breast 10x10 cm tumor! (Huge!) no necrosis - Got clear margins! A miracle!
13 of 18 nodes positive
11-2-09 -12/10 started radiation
12-10-2009 - Finished with radiation!!
2010
1/13/2010-Back on Xeloda x six cycles (have been on Tykerb/Herceptin all along)
4/4/14 - stopped Xeloda/Tykerb one cycle early. Liver enzymes high!
4/20/2010 Clear PET Scan!! NED
6/10/2010 - Finished Herceptin11/8 - Brain METS! CRAP! WBRT only option given. Four mets, separate locations in brain, no SRS
12/10 - Herceptin/Tykerb/Xeloda
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Old 07-14-2010, 11:35 PM   #23
vlcarr
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

I'm so glad I saw this. Being Stage III and just completing my year of treatment I'm now into life after cancer. Thank you so much for posting. I needed to see this today

Had my port removed last week!
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Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 07-22-2010, 08:49 PM   #24
Redwolf8812
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

This is exactly what I needed to read (after Scriptures of course). I was diagnosed today with multicentric IDC in the left breast, 1/1 lymph node, ER-/PR-/HER2+++. So....a rare cancer that is aggressive huh? Nothing a child of God cannot handle.

I'm 41, 3 kids, ages 15, 13, and 6. Going for MRI, pet scan, bone scan, and chest xray next week, followed by mastectomy at least on the one side. Guess I should insist on bilateral mastectomy, huh?
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Old 07-23-2010, 09:52 AM   #25
Sandra in GA
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

That is what I did when I learned I had HER2+ breast cancer and how aggressive it is. My surgeon was telling me there was no disease detected in my right breast and it could be saved. I just told her, "The decision has been made!" I am vert glad I made that decision. Good luck. Some good advice I received from another doctor was to make the best decision with the information I had and never look back. Second guessing can be a real downer and to survive this disease, one has to stay focused on the goal and stay positive.

Prayers are with you. This early time is very difficult.

Sandra
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Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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Old 08-01-2010, 05:45 AM   #26
karent
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

hi my name is karen i was reading your letter i live in australia and had the same her2 stage 3 i was told on my birthday in 2007 and i had not heard of anyone else with this type of breast cancer til i came on this site i an glad of herceptin 2 thank u for your post it has inspired me
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Old 08-01-2010, 06:29 PM   #27
Jackie07
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Welcome, Karen, to this wonderful group.

We've got several members from Australia. You can look them up using the 'Search' button and then chek the Members List.

Many of us use the 'Signature' file to post our treatment history. You can put more details there so the 'newer' comers will be inspired by you as well.

There are more inspiring stories to be found in the 'long-term survivors' and 'long-time survivors' threads.

Welcome again and let's hear more from you.
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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

"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

Last edited by Jackie07; 10-05-2010 at 01:39 PM..
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Old 08-04-2010, 09:11 AM   #28
msleslie
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

I have just signed up for the Phase III ALTTO Clinical trial. I'm scheduled to begin chemo on Aug. 19th. I have to wait until my visit with the chemo nurse for lab work on Aug.16th to find out what arm I will be placed in. I'm prayerful that I will receive Tykerb in addition to the Taxotere, Carboplatin, & Herceptin.
__________________
6/14/2010 - Self discovered Lump; Age 39
6/24/2010 - Biopsy results confirm breast cancer
Right breast, invasive ductal adenocarcinoma
HER2neu positive, BRAC I & II negative
7/8/2010 - Lumpectomy right breast, sentinel lymph node biopsy, & port-a-cath installed on left
Stage II, Size 3.2cm, Clear Nodes, Clear Margins
8/19/2010 - Chemo begins - Taxotere, Carboplatin, Herceptin & Tykerb all simulanteously; ALTTO trial arm 4
9/9/2010 - Chemo dose #2
9/30/2010 - Chemo dose#3
10/21/2010 - Chemo dose#4
11/11/2010 - Chemo dose#5
12/02/1010 - Chemo dose #6 - WooHoo, it is complete!
12/14/2010 - Simulation & Planning session for radiation
02/18/2011 - Completed radiation treatment (33 rounds)
08/04/2011 - Completed Herceptin & Tykerb
09/30/2013 - ultrasound guided biopsy (following annual MRI)
10/1/2013 - new cancer in left breast. 6mm discovered via MRI
10/28/2013 - bilateral mastectomy - no reconstruction
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Old 09-12-2010, 01:13 PM   #29
Jackie07
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Couldn't figure out (find) the Tony Jeffs that Rich had mentioned in Facebook. So I tought I'd bump up this thread...
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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

"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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Old 09-12-2010, 07:44 PM   #30
micheleu
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

To update this... I am now 7 years out!! I hope all stage 3 Her 2 pos women can see this post and have hope for themselves..I remember when I was dx i wanted to read stories of women that had it "worse then me" and still be around. Herceptin is a miracle drug!!
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Michele Ulmer

Dx.2003 Stage 3b 35 pos nodes

Dx August 2003 Stage 3B with 35/35 nodes IDC age 39
Lumpectomy
A/C x4 Taxol x12
35 radiation tx
1Year Herceptin in trial
HER2 vaccine trial Seattle
3 months Tykerb off label
NED

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Old 09-16-2010, 12:04 PM   #31
CDE
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

I see that you had 3 months of Tykerb off label in your signature. How do people get on Tykerb at stage I/II for preventive care if I wanted my wife to do that?
__________________
Caregiver to my wife
32 year old diagnosed with BC
Lump found on left breast with BSE in March 2010
Radiologist told her it was fine,come back in ten years
Gyn told her to see breast specialist
Breast Specialist says it is cancer
Diagnosed July 2010
Lumpectomy in left breast only August 2010

IDC: er-/pr- Her2+++ grade 3 (1.9 cm)
Ki-67 (40%)
DCIS: er10%/pr20% her2- comedonecrosis cribiform high grade (2.2 cm)
(DCIS is attached to IDC;DCIS comprise 67% and IDC 33% )
Angiolymphatic invasion: non identified
0/1 sentinel node positive
1 intrammary node positive
Somewhere between stage 1 and 2
BRCA1/2 Negative
Have one 18 month old daughter
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Old 09-18-2010, 03:00 PM   #32
Baumlisa
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Dear Michelle,
May God bless you and your family, I have been fighting bc for 7 years and have been stage 4 for almost 4 years! Congrats and I hope herceptin works miracles for you, but for me it only worked 6 months...thank goodness for all the new drug therapies!
Lisa Baum
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Old 10-04-2010, 12:51 PM   #33
Joanna J
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

You have given me hope,micheleu I had her2+ er- pr-stageIIa had chemo,37 rnds of radiation & a yr of Herceptin,sometimes I start losing hope & I come back to Her2 support & I start feeling hopeful ! you are a true inspiration,may god rihly bless you. Joanna J
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Old 08-08-2011, 07:51 AM   #34
audibme
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Just a little more encouragement ladies. I'm 4 yrs 6 mos out from Stage 2, HER2+, 2 cm, clear nodes. Surgeon strongly suggested lumpectomy with radiation leaving golfball size hole in breast. I elected double masectomy. Biopsy showed another HER2+ tumor the lumpectomy would have left which did not show up on MRI. 5 months of chemo and 12 months of herceptin. In dr's waiting room on 2/09 I read an artical about herceptin and how it was FDA approved for earlier staged cancer in 11/08. Many Drs cried in the auditorum when this was anounced, b/c we had a very poor prognois without it. My advice.... when fear consumes you, you MUST count your blessings over and over. You will find you feel much better. Stay optimistic and stamp out the fear!!! Bless you all!!
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Old 08-12-2011, 10:52 PM   #35
Pray
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Thank you everyone!! I can honestly say this is the most hopeful I 've felt since I was dx in Nov. 2009!!! ( never got passed the her2 section!)
__________________
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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Old 09-03-2011, 09:54 PM   #36
JennyB
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Is it just me being dumb or does it seem that there are more hormone neg stage 3 survivors than those who are ER/PR pos??
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Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 09-08-2011, 06:26 PM   #37
ljbm
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

I'm not a member of the 5 year club yet but I'm working and praying I get there. I celebrated my 4 year diagnosis anniversary on Tuesday. I was 51 years old, clean mamogram in May and in August I accidentally found a lump. I am sorry to say that I did not do self-exams because I had lumpy breasts most of the time. I knew this one was different. Sure enough stage 3, (6.2 cm tumor)1/18 nodes positive, HER2+++. My family doctor told me to "go home and enjoy my life" which was probably a good thing. I got mad and sought state of the art treatment instead from MD Anderson instead of staying local. With the blesssings of God and the knowledge of MD Anderson, I'm still here and disease free. I had 15 months of chemo, radiation, and 1 year of herceptin. I am so blessed. I worked every day except chemo days. I did take off for radiation because of travel time. I'm 55 now and going stronger than ever. There is hope and life after a cancer diagnosis. I agree, you are not a statistic or a number. You are you. I put my numbers through one of those predictive calculators and they were not great, but I only did it once. Don't dwell on the negative and remember with God all things are possible. Also, stay away from negative people. They are just as toxic as cancer.
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Old 12-06-2011, 08:22 AM   #38
sandra digilio
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Wow all these comments and stories are really encouraging to me as a new member of this site. I was diagnoised with breast cancer in December 2009 then with metastatic cancer a couple of months ago. I have been through the ringer like most of us here. Recently on a scan it was discovered I have met in 3 bone areas and I'm due for a new scan this month to re-check these. Since my scan I have had my ovaries removed hoping to get rid of any extra estrogen my body is producing. I've been having a hard time knowing that since April of 2011 I had it travel to 3 different places it was so fast. It's now in my rib, back & sternum. I wanted to do a trial but at this time they say I have no measurable disease and I'm not eligible for any trials. For me the herceptin, tamoxifin and the bone strengthner alone are not cutting it. I want to switch to femora and try that now that my ovaries are gone. Lets all hope and pray they come out with a cure for this cancer... Peace out
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Old 12-07-2011, 01:16 AM   #39
candlegranny
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

thank you Michele. I needed that post too. I did not have tykerb. why did they give you tykerb? Just wondering why I didnt get it. My doctor said I got the standard treatment and it worked so nothing else till it returns,. He told me 50/50 it will come back but i am standing on the good 50 side! i lost 31 nodes and 18 were positive. there was also 2 nodes with cancer in my neck they could not operate on, but chemo destroyed the cancer and radiation destroyed the nodes. I have stage 2 Lymphedema in my left arm. I wear a compression sleeve every day and do manual lymph drainage daily. sometimes it is a pain, but i am thankful i am alive so my lymphedema is nothing! my arm swells sometime but the sleeve contains it so it will not turn into elephantitus. I find it scary at times, worrying about the cancer coming back, but then i dismiss that negative thought... see it as a waste of energy. concentrate on living but that word cancer still haunts me. thank you for your post I want to be just like you and al the others on here that beat the odds. thanks!! Bonita
__________________
Mammogram Sep 21, 2009 everything good and clear
DX jan 19,2010 Invasive Ductal Carcinoma, Grade 2 Age 56
modified radical masectomy on LEFT side 29 Jan 2010
2.7 cm 18/31 nodes
mets to just above collar bone ( 2 nodes showed in PET)
ER- PR - / Her2 +++ (IHC) Stage 111 C
ki-67 60% nottingham score 7
A/C chemo mar 22,2010 DD
herceptin & taxotere DD june 1,2010
finished taxotere july 12, 2010
finished herceptin 16 May 2011
PET Scan 9 Aug 10, cancer in neck is gone! NED
33 Rads completed 1 Oct 2010
PET/CT Scan 6 Jan 2011 NED
PET/CT Scan 3 Aug 2011
MUGA 59% 3/22/10 -63% 9/23/10 - 51% 1/4/11 - 55% 2/17/11 - 50% 8/3/11
26 Aug 2011 NED
20 Feb 2012 NED
5 Mar 2012 PORT OUT
12 July 2012 DIEP breast reconstruction
23 Aug 2012 NED
15 Nov 2012 new breast tweeked and natural breast uplifted and implant added
17 Feb 2013 NED
27 mar 2013 lipo suction to add fat cells to new breast in hopes for needed adjustment.


"Don't spend your time worrying about when or how you are going to die, spend your time figuring out how you are going to live today". ~Elizabeth Edwards.
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Old 12-07-2011, 01:11 PM   #40
JillaryJill
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

First of all 35 nodes...wow...second of all, 5 years out...I love this post. Also Kudo's to Linda, with 12 positive nodes, just like me. You ladies give me hope!!!
Thank you for posting!
__________________
DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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