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09-08-2007, 10:21 AM
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#1
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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My USA Today interview and a confession...
Hello friends,
I have been away from the Boards for a while and have missed you!
Currently I am home recouperating from Stage 1 DIEP reconstruction (11 days out) and have some time on my hands. It was 2 1/2 years in the making but I decided to GO FOR IT just this past July. I had my chemo port removed also and am hoping I will feel more like my old self (pre cancer) as the days and months progress.
My love and hugs to you all,just wanted to share...
http://www.usatoday.com/news/health/2007-08-26-mastectomy-calendar_N.htm
Marcia |
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09-08-2007, 01:42 PM
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#2
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Senior Member
Join Date: Aug 2006
Posts: 492
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Marcia,
Great article. I wish I could see the pics! I don't know if they will do the same this October, but last year's editions of Self and Allure featured pictorial of women with several types of reconstruction or no reconstruction. The pictures and stories were beautiful!
Thanks for sharing. And I hope you are doing well on your recovery. I had a bilateral DIEP almost a year ago.
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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09-08-2007, 02:48 PM
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#3
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Senior Member
Join Date: Jan 2007
Location: Media (Wawa to be exact), PA
Posts: 104
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I am so proud of you .I learn something about each one of us on this boardevery day. For you I learned just how much of an "in your face" breast cancer survivor you really are. A true activist, and spokes model for all of us.
Melinda
__________________
DX BC 12/06
tumor .9
Lumpectomy 1/8
Mammosite radiation completed 2/10
Stage1/Grade 1
clear Margins /Nodes Neg
ER+
IHC +2 Fish +
ONCO 23
Started TCH on 3/2 for 6 rounds of TC once every three weels and a year of Herceptin every 3 weeks -
Finished everything and now on Aromasin
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09-08-2007, 04:06 PM
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#4
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Welcome Back Marcia,
Wishing you a speedy recovery....
Best Wishes,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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09-08-2007, 06:35 PM
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#5
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Best of luck. I'm sure you will turn out beautiful, BB
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09-08-2007, 07:05 PM
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#6
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Senior Member
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
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Congratulations on sharing yourself with all us BC women and being an inspiration to us. Thanks for the link. I will be ordering the FORCE calendar.
Best well wishes to you in recouperating from the DIEP surgery!!!
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.
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09-08-2007, 09:57 PM
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#7
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Senior Member
Join Date: Dec 2006
Location: Massillon, Ohio
Posts: 247
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thank you so much Marcia for sharing your story with the world. how did you get involved with that article, I really want to make a difference in this world for not only for bc survivors but for women overall. thank you so much for being an inspiration and sharing your story. It is becoming more obvious lately that Oct is bc awareness month isn't it?
__________________
Laurie
Diagonsed 8/10/06 (found own lump)at 35
Her 2 +++, er-/pr-
4 A/C 8-29-06 to 11-06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
12 Taxol 12/18/06-03/06/07
Herceptin 12/18/06- 12/11/2007 done!!! yeah!!!
33 rads started 3/22/07, done!! yeah!! 5/07/07
Lymphedema diagonsed 2/1/07
BRCA1/BRCA2 negative
port out 1/10/08
pregnant after 6 yeas of trying- due mid feb.
Ryder David Kessel Hunter born feb.6th 2009
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09-09-2007, 04:26 AM
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#8
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Senior Member
Join Date: Mar 2006
Posts: 1,843
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Well done and congratulations.
I hope you are healing well.
RB
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09-09-2007, 03:23 PM
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#9
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Hello again ladies,
Having some healing issues so I will be returning to my surgeons office in New Orleans tomorrow.
Laurie, I have been involved with FORCE for 6 years (way before my dx). It was only after "the shoe dropped" that I realized i *might* be something other than BRCA, and landed here with this saavy group! Years of watching family members being dxed w BC spurred me into investigative mode. I got involved w advocacy and was trained to work on a BRCA helpline and the rest is history. I know there are many opportunities for those willing to travel and speak, perhaps Christine and Joe have something specific for Her2 that you could sink your teeth into?
Thank you all for your good wishes!
Marcia
Last edited by Soccermom; 09-09-2007 at 03:24 PM..
Reason: misspelling
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09-09-2007, 04:56 PM
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#10
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Marcia, bless your heart for being so real and so committed to your purpose (and ours)! You're terrific and courageous and so much more! God speed!
__________________
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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09-09-2007, 10:03 PM
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#11
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Marcia
Congratulations and keep up the good work!'
Out of curiosity, have any other of your family members with breast cancer tested her2+, have any others been treated with herceptin? How long after initial diagnosis did their cancer recur (if and when it did) and , without being insensitive, of those who died, how long did they survive after recurrence/metastasis? Since her2 has only been tested for relatively recently, the average time to recurrence and average survival after recurrence give some
inkling as to whether it might have been her2+ bc. The reason I ask is they have discovered a new gene tied to her2 called FOXP3 (don't remember if you responded to my post on that or my other post on familial bc)which is X-linked so that only a single copy of the gene is required in order to result in breast cancer. Researchers don't seem to interested in it yet, as they don't know of enought familial bc
to "warrant a study"(how many should it take?)
I ave previously posted asking those on the board if her2 bd might run in their family. Perhaps I should post again (I think many threads remain lost after the technical difficulties we had earlier this year)
Congratulations again and thanks in advance for any info. I am sure there are those with daughters who would appreciate a test to determine if they have passed this on should this pan out.
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09-09-2007, 11:03 PM
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#12
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Senior Member
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
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Lani, Some time ago I read something that said HER2 is not hereditery, and that although HER2 has something to do with Chromosome 17, her2 positive in only present on the surface of cancer cells (not normal cells).
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.
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09-13-2007, 03:49 PM
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#13
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Hey Lani!
Sorry for the delay in response... I had healing issues and ended up having to go back into surgery to get remove necrotic tissue etc. So...I just got home from Louisiana...
No one in my family has had Her2neu + BC. I know that at my Moms initial diagnosis back in 1990,and again in 1995 (new primary) Her2 testing wasnt available. Never thought to have her tumors looked at and possibly tested (more recently)...Hmmm.
We will operate on the assumption that my DD is high risk and get her in a high risk screening program as soon as she turns 21.
Thanks for sharing in the concern for our children,
Marcia
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09-13-2007, 04:22 PM
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#14
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Member
Join Date: Sep 2007
Posts: 10
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Congrats! I too decided to take the plunge and am recovering from the insertion of my permanent implants. Boy, these are much perkier than my originals! I am happy to have this phase of my recovery behind me.
I have my next H treatment on Tues. Even tho we expect 108F here I end up wearing a sweater on infusion days because the chills are so bad. They only last about 24 hours and then its back to the hot flashes and night sweats from the Tam. Does any one else have these dramatic swings in body temp? Now that I am reconstructed I am having "boob sweats" for the first time in over a year.
I will now be able to buy something other than shoes. My weight and chest size have stablized, so I'm going to indulge in some shopping therapy.
God loves to laugh.
__________________
jennifer
dx 6/06
Double mas 8/06
Stage IIa
ER+/PR-, HER2+
Taxotere completed 12/06
Tamoxifen
Herceptin
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09-13-2007, 04:31 PM
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#15
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I am definitely more sensitive to external temperature changes over the last 3 years of treatment. And my internal temperature is a mystery, an inexact science as it were. But, I just take a hoody with me everywhere I go, because it seems I create my own personal weather no matter where I am...
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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09-13-2007, 06:02 PM
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#16
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Hey there Jen and Brenda..
Love the "personal weather" comment Brenda! Since surgery two weeks ago I havent had many hot flashes... but having been fighting infection and have been on antibiotics.
Best wishes on your new "boobettes" ,Jennifer! (Whats a "boob sweat"?)
Hugs,Marcia
Last edited by Soccermom; 09-13-2007 at 06:03 PM..
Reason: question
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09-14-2007, 01:53 PM
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#17
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Senior Member
Join Date: Aug 2007
Location: Newport Beach, CA
Posts: 161
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Hey Calendar Girl!!
Hi Marcia,
This is a great idea for empowering women and sharing the very real message of what goes on during and following bc. Excellent and I'm sure you look "maaaaaaaaahhhhhhhvelous."
Vicki Z in Calif.
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09-14-2007, 02:27 PM
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#18
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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I don't know what boob sweats are, but I do know what icecubeboob is...at the least sign of cold, I swear any liquid in my implant turns to ice....it feels so cold it hurts....guess I need a boob heater for winter here in IL.
Congrats on the calendar...way to go! You are shining for many of us!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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09-29-2007, 09:17 AM
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#19
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Hi Guys,
Havent been around too much as I had some complications and had to return to surgery (2X). Still on three kinds of antibiotics and anti fungals and wondering when did I get to be such a lousy healer?! Nevr had these healing issues before BC,argh.
Sheila thanks for kind comments! I have heard that those with implants that live in cold climes have "iceboob" issues, its ALWAYS something!
Just wanted to share another interview that i did...I actually like this one better...
http://www2.tbo.com/content/2007/sep...u/?life-health
Last night I read about our Shell passing away and went to bed crying. I have very dear friends on the FORCE site recurring and of course so many sweet friends here...It breaks my heart , each and every time we lose someone.
I HATE this da*n disease ! Next year I will pose for the 2010 calendar with my newly reconstructed boobettes...ANYTHING to get us that CURE!
All for the cause!!!
Marcia |
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09-30-2007, 11:50 PM
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#20
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Marcia,
I read about your experiences with the infection. I have a friend in CA that recently had the DIEP and had a very serious infection. She ended up going to an infectious disease specialist and I believe it is now contained. They said it must have been something she picked up while in the hospital.
I just had my stage 2 of the DIEP about 2 wks ago. I had no problems with stage 1, but last wk I had an inflammation, probably cellulitis, on one breast. I was on antibiotics for 7 days and the redness has been reduced significantly. Hopefully it is all contained. It was never painful and there was no discharge, just red.
I hope your healing goes well from here on. Let me know if I can share with you any of my experiences.
Take care.
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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