Komen reunion!

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Skye
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Re:Komen reunion! - Saturday, April 06, 2013 12:52 AM
I am also a long-time Komen "sister."  I joined Komen in 2006, pretty much the same week as my diagnosis.  I came here scared and looking for help, and I found it.  I found a sisterhood I had never imagined that gave me support and kind words, often in the middle of the night, when I would log on, frightened and hoping someone would be able to help me make sense of what was happening.  

I was diagnosed on August 8, 2006 with invasive ductal carcinoma.  There were several suspicious areas on my mammogram, so I had many biopsies.  Two of the biopsies came back positive for cancer in my left breast, but since I had dense breast tissue, I was scared something would be missed.  I ended up having a bilateral mastectomy in the fall of that year and then undergoing chemo.  

I've met some of my pink "sisters" in person thanks to a few gatherings here in Michigan and  in Indiana.  Most of you, though, I just know through this site, and through Facebook.  

I hope I can be here for those who are newly diagnosed . I know how scary it can be to hear the words, "you have cancer."  I had no family history, no known risk factors, and I was only 41 when I was diagnosed--it was from my first mammogram.  My son was just three at the time, and I was terrified that I would not be here to watch him grow up.  He is nine now, and the support I've received on this site, and through personal contact with many of the women here has been a life saver for me.  

Skye
 Mid-Michigan; Diagnosed by first mammogram Aug 2006 at age 41; Bilateral Mastectomy 9-27-06; IDC, Stage II, Grade III; Numerous areas of DCIS; lymph Nodes negative; Chemo: (CAF) 11/06-2/07; Arimidex and Lupron, 2007-2012. 

Tricia Keegan
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Re:Komen reunion! - Saturday, April 06, 2013 7:37 AM
Wow!!! I just logged in and was so delighted to see so many of you wonderful Komen sista's have posted here, its even more wonderful to know so many of you are doing great!!!:) What a far cry from the scared and stressed women we were then, I've heard people come into our lives for a reason and I do believe we all were blessed in finding each other when we most needed support and its wonderful we all have remained good friends all these years later:) I'm sure it'll give some confidence and reassurance to others newly dx to read this thread and know there really IS life after bc and thank you all for checking in!:) xx
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Cathy15087
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  • Location: Oswego, IL
Re:Komen reunion! - Saturday, April 06, 2013 8:04 AM
Deb aka Mimi - I found how to change signature - it is under user control panel - I had to update mine too!
Dx 2/1/07 IDC 9mm Stage 1 at age 49
Lumpectomy 2/21/07, SNB-4 nodes negative
ER/PR+, HER2-, Oncotype score 11
Mammosite radiation ended 3/05/07
Didn't tolerate Tamoxifen
oopherectomy 6/15/07
started Femara - 7/26/07
Finished Femara - July 2012!!!  YES!!!

Susan
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Re:Komen reunion! - Saturday, April 06, 2013 8:09 AM
Thank you Tricia,for making this thread! Komen was my life line through treatment. I have so many wonderful sisters in my life now. I hope gathering here will not only keep us closer, but that I will find NEW sisters to love. Coming here now, is bitter sweet! Lost some sisters that I really love! It brings back the horror of the dx. and treatments we all shared with each other. It also brings back the love and support that I could get no where else, because the ladies here "get it." We cry together, but we laugh together. I hope I will recognize my sisters with their nicknames! I need to find my notebook...YES, I kept a notebook of who is who, dx, birthdays, carepages, etc. It would be great for our sisterhood to grow and many newcomers to join our "real life" reunions that are held each Fall. Isn't it wonderful to think about each other and have a lump in our throat, tears in our eyes, BUT WE ARE SMILING!?! I hope to add many names to my list of pink sisters. Tricia, you will have to encourage the ones we don't know to come here, read, participate, grow in knowledge of our disease, cry, laugh and enjoy each other. To my sisters: I cannot thank you enough for all the support through the last six years! The ones I got to meet and celebrate life with, is an experience I just cannot put into words. The real "HUGS" were priceless! Breast cancer is a life changing experience that all of you made easier to bare. For those sisters that are still fighting; I pray for you daily. I pray for a cure! I wish I could express how being back here is making me feel. Anxious, would be one word. Maybe, in time, it will be more comfortable for me. I was a WARRIOR when this was my home away from home. I will fight the awkward feeling so that I CAN pay it forward. PINK HUGS
Susan in TN
dx 3/05/07
IDC 3 cm.,10% DCIS/Stage IIB/T2/G2
6/9 + lymph nodes
ER+ 90%/ PR-/ HER2-
A/C,Taxotere
Simple rt. mast.
Arimidex 
Radiation
carepage:blackeyedsue

Ruthie1956
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Re:Komen reunion! - Saturday, April 06, 2013 12:15 PM
I noticed that my lines under my pic says I joined in 2008, well that was the second time when I had troubles with Firefox and the new changes with the "new and improved" komen boards. :D  I really have been here since about mid November of 2006. :) I too am glad to see all these gals, some of whom I'd lost track of for a little while...
Love Ruth
Diag. 7/06 2 lumpectomies, no clear margins
Inflammatory BC, DCIS and IDC
Chemo Aug 06-Dec 06
bilat mast 1/07
Radiation 2/07-4/07
Tried all AIs (ER/PR +, Her2 -) 
NED thus far, have RA now

Cancer is like quicksand, the more you struggle alone, the deeper you sink; but if you relax, spread yourself out and reach for help you are rescued! (rufus mcaine)

JSO
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Re:Komen reunion! - Saturday, April 06, 2013 2:33 PM
I joined Komen around July 2008 after my second diagnosis with aggressive, high grade DCIS in 6 months.  I was facing a mastectomy in August and the Komen sisters helped me through decisions, surgery and recovery.  I ended up in the hospital 9 days due to complications with the surgery, leech therapy and I think it was 10 units of blood.  3 days in intensive care, 3 days in intermediate care and 3 in a regular area.  What an experience!  I was out of work for 2 months trying to recover.  Then had to start over again in February 2009 with the reconstruction.  I finished surgeries and stayed on the board off and on for a while.  I was back when I had the diagnosis of high grade, aggressive DCIS in the left breast (and learning I was BRCA2) and went through surgeries and recovery.  Off and on again but back when my sweet 38 year old niece starting losing her 4 year battle with stage IV breast cancer.  Her service was in Portland and sweet Nuzzy Nana (I think I spelled that right) came to Meg's service.  Unfortunate to meet under those circumstances, but it was very sweet of her to come and represent the Komen sisters.  I met Ilene in January this year when we were on vacation and that set in motion me being able to go the BF2013 in Indiana this year where I will be able to meet some other sisters who I have met here and on Facebook.
 
I know everyone helped me so much through all my surgeries and recovery and questions asked. Thank you Tricia for starting this post!!
 
I have told myself I need to get on the boards again more often and I am trying!! 
Joyce, South Jordan, UT 
DCIS grade 1;lumpectomy 1/24/08
biopsy 7/3/08;DCIS grade 3 multi-focal
rb mastectomy/reconstruct TRAM 8/26/08
LAT Flap-2/3/09, TRAM breast reconstruct failed
RB exchange; LB lift & implant surgery 3/24/09
New nip! -5/12/09
Stereotactic L breast 10/26/11;DCIS grade 3, BRCA2+ 
LB mastectomy/LAT flap/sentinel node biopsy 12/8/11 
Final surgery 5/8/12!!!

Rena2
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Re:Komen reunion! - Saturday, April 06, 2013 5:38 PM
My, it's been a long time since I've posted here. I was so scared when I first joined and so shy, I  was more of a stalker than a contributor but I hung on every word. I would not have made it with out all you wonderful ladies. So happy that posting here actually led to meeting some amazing women!  We share a bond like no other...I love you all!
 
Greenville IL
dx 05/2007
lumpectomy x2
55 yrs old when dx
stage 111C, grade3 ,2 out of 22 nodes+
er/pr+,her-
4x A/C, 4x Taxol ended 9/17/07
Radiation started 11/5/07 ended 12/28/07
(35 treatments)
started Arimidex 10/6/07

Tricia Keegan
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Re:Komen reunion! - Saturday, April 06, 2013 6:12 PM
I'm stopping by to fill all our virtual glasses with champaigne and think we've all earned a glass, slainte ladies!!! x
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Marie P Harrington
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Re:Komen reunion! - Saturday, April 06, 2013 6:54 PM
Hey Ladies,
I couldn't miss stopping by to say hello again, although I do see most of you on Facebook now. But just coming back here made me feel so warm and comfortable. It's been 7 years this past December and I cannot tell you how much I think of all of us in those awful times. I cound not have done it without the support I received here. Still NED, but my heart just breaks everytime we have lost a friend. But we are/were ALL fighter's and I love you all. I hope some day there will be a reunion closer to the west coast, and you can bet I'll be there.
Love to you all. You are all my lifetime friends.
God Bless, Marie
[size=2 font="times new roman"]DX 10/05 IDC LB
12/6/05 LB Mast w/expander and recon
Rgt Aug
TX 4 rounds A/C every three weeks finished 3/16/06
Arimidex since.
"Do not resent growing old, many are denied the privilege
"

Jeanne Serbeck
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Re:Komen reunion! - Saturday, April 06, 2013 7:11 PM
Tricia you are wonderful not just for setting up this reunion but also for moderating this forum all of these years!  LOVE and HUGS to you!  As with everyone else, this site was a lifesaver for me when I was first diagnosed.  At the time I joined, either everyone wasn't posting their stage, or maybe there weren't any stage 3's that I saw, and I told my husband that I was doomed!  LOL!  I must have posted something to that effect and Rena stepped up and shared her story with me and I knew there was hope!  So many wonderful women shared their inspirational stories...who could not feel hope after 'meeting' all of these wonderful women.  It has been awhile since I have been back here, but it is so nice to see the screen names that bring back memories of those days.  Without the support of everyone I met here, looking back to 2005 would be a horrible memory, but so much comfort and encouragement found here, it is just something in my past, not some horrible memory.  Unfortunately, we have lost too many along the way.  Their passing affects us all, as does the honesty and courage with which they fought the battle...we learn from it all.  Peace and Blessings to all!

Hugs!
Jeanne
Houston, TX
Dx 9/30/05
Lumpectomy, SNB 10/17/05
Stage IIIc, 17/23 nodes positive
DD a/c
12 weeks Taxol
Mastectomy 5/06
Radiation 6 weeks
Femara
SURVIVOR!!!!

sharonma
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Re:Komen reunion! - Saturday, April 06, 2013 7:23 PM
Just wanted all of you "old timers". And "new timers" to notice that our Tricia has made 17,448 posts that have helped me and countless others on their bc travels.  The good, the bad, and the ugly!
.    I count you as a friend, my dearPalsPals

dx ILC/dcis excisional biopsy 5/30/08
r segmental mast (partial) snb 6/4
node neg stage1 gr ll
er+/pr- Her2 - Oncotype Dx 11
R mast 9/22/08 w DIEP
tamox,now AI 
BRCA 1 & 2 NEG
davinci hyst/bso,  

Tricia Keegan
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Re:Komen reunion! - Saturday, April 06, 2013 7:28 PM
Thank you Jeanne!!! I share your thoughts and am sad on losing so many of our komen sisters and its maddening to think the Dr's still dont know why!!! The Komen boards have been so special to me that I want to continue giving some advice or a welcome to all who come here and FB is not private enough for me!!!
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Tricia Keegan
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Re:Komen reunion! - Saturday, April 06, 2013 7:30 PM
Lol wow Sharon, I hadn't noticed but if I helped anyone it was worth the effort:)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

ctGailco
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Re:Komen reunion! - Saturday, April 06, 2013 9:53 PM
Toni! We really should plan to meet up again sometime soon. Glad to see you here. Warmly, Gail
Life doesn't have to be perfect to be wonderful!

Pat Patterson
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Re:Komen reunion! - Sunday, April 07, 2013 7:54 AM
It goes without saying that you all have "saved" me over and over again....and continue to do so!  It is good to see some old firends post here again.  Jeanne, heard you moved to Alaska?  I have a dear friend who lived there for 11 years...PM me:-)  Ann and Marie, hope you are well!  Deb, you are a ROCK!   I pray I will see Sharon and Elaine in September, we all are truly are connected in a way that goes beyond friendship, with Tricia and Rena at the helm!  I have never posted here and not come away with answers, or the strength and support when I needed it the most,  and I thank you all for that!  FIVE years, here I come! 
DX 5/13/08 Clearwater, FL HER2 +
IDC Stage IIIA changed 12/2/08 to IIB Grade 3
Taxotere, Carbo & Herceptin  6/11/08
Part Mas 11/5/08 SNB neg & addl node neg - CLEAN MARGINS!
Arimidex 11/25/08  35 Rads 12/15/08

ElaineQW
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Re:Komen reunion! - Sunday, April 07, 2013 8:12 AM
The first time I came to the site and read the posts I thought "not for me - too depressing and I don't want to be brought down."  A couple of of months later after my mastectomy, I think -- I looked in again and thought "ok, I'll just ask a question."  I immediately got responses and through amazingly, could FEEL the kindness and camaraderie!!  I was so surprised and it felt so good....so here I am 5 years later, so grateful for all of you.

Thank you Tricia for starting this thread - you are one special woman in so many ways.  Rena - thank you for having 22 positive nodes.  That information alone, made me feel as if I had a chance :)  Honestly true.  Sharonma, thank you for your humor and your constancy (is that a word?) in all situations.  Pat, thank you for the joy you share through your own tears.  Dana, thank you for showing us the definition of determination.  Toni, Annette, Marie, Deb Joyce, NN and names I am forgetting (chemobrain :) ..... Thanks to ALL of you for giving me the comfort and companionship I needed to get through this, which continues to this day, even in my current state of NED and the ever-present "what if."

A special shout-out to the sisters we've lost along the way.  They remind us that we are amazing, courageous, and that we are WARRIORS!

Hug,
Elaine

 A person's greatness is the power to stand alone;to be able to make her own choice; in action,to write anew her own law; to choose her own sacrifices; run her own dangers; win her own freedom; venture her own destruction; to choose her own happiness 
 






Pat Patterson
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Re:Komen reunion! - Sunday, April 07, 2013 9:35 AM
AMEN!!!! 
DX 5/13/08 Clearwater, FL HER2 +
IDC Stage IIIA changed 12/2/08 to IIB Grade 3
Taxotere, Carbo & Herceptin  6/11/08
Part Mas 11/5/08 SNB neg & addl node neg - CLEAN MARGINS!
Arimidex 11/25/08  35 Rads 12/15/08

Ilene
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Re:Komen reunion! - Sunday, April 07, 2013 11:48 AM
Love seeing all of the girls back on Komen to support our new sisters.  Hope to see more!

Tricia and Rena - I know several have said it, but I must chime in ... thank you both SO MUCH for sticking with this.  You are strong, loving, inspirational and saving lives and I wish we lived close enough that I could hug you both!

As I've been trying to peruse through the message boards, I'm finding it difficult to find current threads.  I click on the date column to sort by date, but nothing happens, and the same few threads still appear at the top of Sound Off, no matter what I do.  Is there a secret to navigating through the boards to find who has posted recently who might be in need of advice or just an understanding ear?
Ilene
Cali
Diag 1/2006, DCIS-left, IDC-right, ER+/PR+, Node Neg, Stage 1
Bilat Mast 2/2006
6 Rnds Chemo (FAC)
Right then Left exp infect/removed
Right lat dorsi 10/2006
Left lat dorsi 1/2007
EXCHANGE 4/23/2007!
On Tamoxifen since 2007 (on 10-yr cycle)

Nuzzys Nana
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Re:Komen reunion! - Sunday, April 07, 2013 12:01 PM
Hi Ilene, It is so great to hear from you and many of the others whom I remember from my early days with Komen. I know there are many using on Facebook but I am not one of them so it is wonderful to know there are a slew of us who are still living with our friend, NED. As for your troubles with this website, I always click on the Forum Menu on the top left of the screen and choose "Posts since last visit". It works every time, but I realize screens and operating systems can play tricks, so this is probably no help at all. Take care.
Lumpectomy 4/14/05 at age 69
Stage 1, 2cm, Node Negative
Grade 3, Triple Negative
AC/Taxol, Radiation,
BRCA2 positive (It's always something!)
No Family History

Ilene
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Re:Komen reunion! - Sunday, April 07, 2013 12:15 PM
Hey, Nuzzy's Nana!  Nice to see you again!  That Forum Menu trick worked perfectly!  Thank you!
Ilene
Cali
Diag 1/2006, DCIS-left, IDC-right, ER+/PR+, Node Neg, Stage 1
Bilat Mast 2/2006
6 Rnds Chemo (FAC)
Right then Left exp infect/removed
Right lat dorsi 10/2006
Left lat dorsi 1/2007
EXCHANGE 4/23/2007!
On Tamoxifen since 2007 (on 10-yr cycle)

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