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Topic: IBC Survivors 15+ years - INSPIRATION

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  • Posted on: Jun 5, 2009 03:24 am, edited Nov 17, 2009 11:34 PM by Gg08
Bonnie
Joined: Aug 2008
Posts: 669
Gg08 wrote:

Are you or someone you know an IBC survivor? [give first and/or bco member name, state you live in & year diagnosed]

IBC HALL of SURVIVORS:

26 years - Celia (Bayyyy's friend) in New Jersey - dx 1983

18 years - Pam (farila_1966's friend) in ?? - dx 1991

17 years - Deb (Gg08's friend) in Arizona - dx 1992

17 years - Pat (Gg08's friend) in Ohio - dx 1992

16 years - Gail (GailHurt) in Texas - dx 1993

15 years - Cheryl (Caseysmom's friend) in Michigan - dx 1994

15 years - Ginny (ibcRN) in Alabama - dx 1994

13 years - Marie (on ibcsupport.org) in South Carolina - dx 1996

12 years - Maryanne (on eraseibc.com) in Ohio - dx 1997

11 years - Myra (on eraseibc.com) in California - dx 1998

10 years - Elaine (ElaineM) in ?? - dx 1999

10 years - Jean (on ibcsupport.org) in North Carolina - dx 1999

8 years  - Charlotte (on ibcsupport.org) in North Carolina - dx 2001

8 years  - Sandra (on ibcsupport.org) in California - dx 2001

8 years  - Sandra (on eraseibc.com) in Utah - dx 2001

8 years  - Wendy (on ibcsupport.org) in Florida - dx 2001

7 years  - Amy (on eraseibc.com) in Texas - dx 2002

7 years  - Bonnie (Gg08's friend) in Maryland - dx 2002

7 years  - Nicole (on ibcsupport.org) in Nevada - dx 2002

7 years  - Nina (on eraseibc.com) in Georgia - dx 2002

7 years  - Sandra (Rosie1128) in United Kingdom - dx 2002

7 years  - Terri (Nicole on ibcsupport.org friend) in Michigan - dx 2002

6 years  - Karen (on ibcsupport.org) in Ontario Canada - dx 2003

5 years  - Alaina (on eraseibc.com) in Ohio - dx 2004

5 years  - Laura (Caseysmom) in Michigan - dx 2004

5 years  - Lisa (on eraseibc.com) in Ohio - dx 2004

5 years  - Pat (on ibcsupport.org) in Missouri - dx 2004

5 years  - Tammy (Tammy_Kinas) in Tennessee - dx 2004

4 years  - Bernadette (on ibcsupport.org) in Illinois - dx 2005

4 years  - Jackie (Jessica29) in United Kingdom - dx 2005

4 years  - Kelly (ibc3c) in Wisconsin - dx 2005

4 years  - Kitty (kwhite's friend) in New Hampshire - dx 2005

4 years  - Krysti (on ibcsupport.org) in Indiana - dx 2005

4 years  - Lexi (lexi4) in California - dx 2005

4 years  - (Simimom) in California - dx 2005

4 years  - Tina (txred9876) in Texas - dx 2005

3 years  - Cathy (on ibcsupport.org) in Ontario Canada - dx 2006

3 years  - Cathy (on ibcsupport.org) in England - dx 2006

3 years -  Ioanna (on ibcsupport.org) in Greece - dx 2006

3 years  - Karen (kwhite) in New Hampshire - dx 2006

3 years  - Renee (on eraseibc.com) in Manitoba Canada - dx 2006

3 years  - Susan (on ibcsupport.org) in Texas - dx 2006

3 years  - Sylvia (on ibcsupport.org) in Quebec Canada - dx 2006

2 years  - Carol (on ibcsupport.org) in South Carolina - dx 2007

2 years  - Cathleen (on ibcsupport.org) in Ontario Canada - dx 2007

2 years  - Claudia (Claudia413) in Florida - dx 2007

2 years  - Pam (on ibcsupport.org) in Minnesota - dx 2007

2 years  - Tess (on ibcsupport.org) in Pennsylvania - dx 2007

1 year    - Anne (on ibcsupport.org) in Florida - dx 2008

1 year    - Bonnie (Gg08) in Louisiana - dx 2008

1 year    - Carol (atheist) in Texas - dx 2008

1 year    - Darlene (on eraseibc.com) in Illinois - dx 2008

1 year    - Diane (on ibcsupport.org) in Texas - dx 2008

1 year    - Dorothy (dorfar) in Connecticut - dx 2008

1 year    - (huntersmom) in Florida - dx 2008

1 year    - Karen (on ibcsupport.org) in North Carolina - dx 2008

1 year    - Jennifer (ibjennifer125) in Kentucky - dx 2008

1 year    - Pam (on eraseibc.com) in Illinois - dx 2008

<1 year  - Lori (lorieg) in Ohio - dx 2009

<1 year  - (NYmom60) in New York - dx 2009

<1 year  - Tami (ameron) in Florida - dx 2009

<1 year  - Vilma (activern) in Maryland - dx 2009

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lexi4
Joined: Nov 2005
Posts: 2,230
Jun 5, 2009 07:29 pm lexi4 wrote:

Awesome news!! Thanks for sharing!!

Lexi


Dx 8/22/2005, IBC, 3cm, Stage IIIb, Grade 3, 5/6 nodes, ER-/PR-, HER2+
Caseysmom
Clinton Township, MI
Joined: Sep 2007
Posts: 492
Jun 6, 2009 07:47 am Caseysmom wrote:

Gg08:

This is great news!

My sister's boss's wife is a 15 yr survivor. 

This August it will be 4yrs NED for me.

Laura


Dx 7/19/2004, IBC, Stage IIIb, 9/17 nodes, ER-/PR+, HER2-
Gg08
Bonnie
Joined: Aug 2008
Posts: 669
Jun 9, 2009 01:45 am, edited Aug 17, 2009 01:08 AM by Gg08 Gg08 wrote:
This Post was deleted by Gg08.
Caseysmom
Clinton Township, MI
Joined: Sep 2007
Posts: 492
Jun 9, 2009 07:02 pm Caseysmom wrote:

Gg08:

Thanks Gg08!  I will ask my sister for that information.

Hugs

Laura


Dx 7/19/2004, IBC, Stage IIIb, 9/17 nodes, ER-/PR+, HER2-
Diana63
Oh
Joined: Oct 2007
Posts: 513
Jun 9, 2009 08:17 pm, edited Jun 10, 2009 10:30 PM by Diana63 Diana63 wrote:
This Post was deleted by Diana63.
Diana63
Oh
Joined: Oct 2007
Posts: 513
Jun 9, 2009 08:18 pm, edited Jun 10, 2009 10:30 PM by Diana63 Diana63 wrote:
This Post was deleted by Diana63.
Gg08
Bonnie
Joined: Aug 2008
Posts: 669
Jun 9, 2009 11:07 pm, edited Jun 12, 2009 09:10 AM by Gg08 Gg08 wrote:
This Post was deleted by Gg08.
Caseysmom
Clinton Township, MI
Joined: Sep 2007
Posts: 492
Jun 12, 2009 08:29 am Caseysmom wrote:

Gg08:

I spoke with my sister and it is ok to post the 1st name and state. Cheryl,  Michigan.

Hugs

Laura


Dx 7/19/2004, IBC, Stage IIIb, 9/17 nodes, ER-/PR+, HER2-
Rosie1138
United Kingdom
Joined: Apr 2009
Posts: 5
Jun 12, 2009 02:06 pm Rosie1138 wrote:

How wonderful to read of 17 year survivors of IBC.  I will have survived 7 years this November.  Diagnosed Stage IIIb, Grade 3 with suspect node in the neck.  I have had chemo and radiation but not surgery.  Just had my yearly mammogram and it came back clear.  Sandra (UK)

Rosie1138
Caseysmom
Clinton Township, MI
Joined: Sep 2007
Posts: 492
Jun 12, 2009 02:18 pm Caseysmom wrote:

Sandra:

Welcome and congratulation on 7 years of NED.

Hugs

Laura


Dx 7/19/2004, IBC, Stage IIIb, 9/17 nodes, ER-/PR+, HER2-
ameron
Clearwater, FL
Joined: Apr 2009
Posts: 50
Jun 12, 2009 09:19 pm ameron wrote:

Congratulations ALL!

I am newly diagnosed with IBC in May....I need to update my diagnosis section...while I am so happy to see this list....I must say I hope it gets longer!!!  I hope all the longtime IBC survivors check in soon!!  I need more inspiration!
Gg08
Bonnie
Joined: Aug 2008
Posts: 669
Jun 15, 2009 04:55 pm, edited Aug 17, 2009 01:08 AM by Gg08 Gg08 wrote:
This Post was deleted by Gg08.
NYmom60
Joined: May 2009
Posts: 32
Jun 15, 2009 10:03 pm NYmom60 wrote:

What a wonderful list-congratulations to all! 


Dx 4/22/2009, IBC, 2cm, Stage IIIb, Grade 3, ER+, HER2+
Gg08
Bonnie
Joined: Aug 2008
Posts: 669
Jun 18, 2009 01:15 am, edited Aug 17, 2009 01:08 AM by Gg08 Gg08 wrote:
This Post was deleted by Gg08.
Jessica29
United Kingdom
Joined: Oct 2008
Posts: 32
Jun 18, 2009 12:56 pm Jessica29 wrote:

DX October 2005 so 4 years approaching :)

I have skin mets and have always been on some kind of treatment, and indeed always will be so cannot claim to have ever been NED but I'm doing fine!

 Jackie x

Jessica x
Dx 10/2005, IBC, Grade 3, 8/9 nodes, ER+, HER2+
Gg08
Bonnie
Joined: Aug 2008
Posts: 669
Jun 18, 2009 01:21 pm, edited Aug 17, 2009 01:07 AM by Gg08 Gg08 wrote:
This Post was deleted by Gg08.
Jessica29
United Kingdom
Joined: Oct 2008
Posts: 32
Jun 18, 2009 01:25 pm Jessica29 wrote:

Hi Bonnie,

I'm Jackie :)

Jessica x
Dx 10/2005, IBC, Grade 3, 8/9 nodes, ER+, HER2+
Gg08
Bonnie
Joined: Aug 2008
Posts: 669
Jun 18, 2009 01:36 pm, edited Aug 17, 2009 01:07 AM by Gg08 Gg08 wrote:
This Post was deleted by Gg08.
g94u67
Whittier, CA
Joined: Jun 2008
Posts: 311
Jun 21, 2009 01:08 pm g94u67 wrote:

Awesome to hear!

Jeannine

Live, Laugh, Love and Keep Smiling
Dx 7/2/2008, IDC, 1cm, Stage IIb, Grade 3, ER-/PR-, HER2-
huntersmom
Cape Coral, Fl
Joined: Aug 2009
Posts: 18
Sep 9, 2009 02:58 pm huntersmom wrote:

Wow - encouraging!  I am only 8 mos in remission and very freaked out about future and I have a young son.  Love to see these numbers!

Hunter's Mom
lorieg
Joined: Aug 2009
Posts: 45
Sep 9, 2009 11:08 pm lorieg wrote:

Thanks so much for posting this!   Iwas just diagnosed 3 weeks ago and still in that "OMG" phase.  It helps to hear some good IBC stories!
Bayyyy
NJ
Joined: May 2006
Posts: 1,311
Sep 9, 2009 11:36 pm, edited Sep 9, 2009 11:38 PM by Bayyyy Bayyyy wrote:

I'm so glad I saw this thread!

I went to a breast cancer conference in 2007 held in Washington DC area. There, I befriended 2 women--we wound up sitting near each other at all the breakfasts/dinners etc. But here's the important part-----Celia, one of these sweet beautiful ladies is a 26 year survivor of IBC! She had it when she was 30 and she is now 56.  She is diligent with not eating any bad fats--that's what she credits her good health to. She had a hard time getting diagnosed at first which seems to be a problem for most IBC gals. But here she is, strong and healthy and happy with lots of smile lines on her beautiful face.

Edited to add: She lives in NJ

Some people never find it, some only pretend, but I just want to live happily ever after every now and then~Jimmy buffett/ The grand essentials of happiness are: something to do, something to love, and something to hope for~Allan K. Chalmers
Gg08
Bonnie
Joined: Aug 2008
Posts: 669
Sep 10, 2009 02:00 pm, edited Sep 29, 2009 08:21 PM by Gg08 Gg08 wrote:
This Post was deleted by Gg08.
kwhite
Near Concord, NH
Joined: Jan 2008
Posts: 37
Sep 10, 2009 02:37 pm kwhite wrote:

Hi, Bonnie!

 Thank you for doing this!!!  I'm KWhite and I live in NH ... feel free to add that to your posting, I will update my profile.  You can also list "Kitty in NH"  as a 4 year survivor. And I know several 5+ year survivors in Mass that I will see at the end of the month. I'll see if I can get their permission to list them as well. Who knows! maybe some are readers of the site.


Diagnosis: 12/7/2006, IBC, Stage IIIb, Grade 2, 4/11 nodes, ER+/PR+, HER2-
Gg08
Bonnie
Joined: Aug 2008
Posts: 669
Sep 10, 2009 02:42 pm, edited Sep 29, 2009 08:22 PM by Gg08 Gg08 wrote:
This Post was deleted by Gg08.
activern
Laurel, MD
Joined: Aug 2009
Posts: 322
Sep 15, 2009 09:47 pm activern wrote:

Wow! So happy to hear this news - this makes me feel so inspired!

Vilma Gordon
Diagnosis: 8/7/2009, IBC, Stage IV, ER+/PR+, HER2+
ibjennifer1…
Ashland, Ky
Joined: Jul 2009
Posts: 54
Sep 17, 2009 10:55 am ibjennifer125 wrote:

I am 3 weeks out of rads.....mastectomy before that...and 8 rounds of HARD chemo.   My tumor was completely gone by surgery time ( the path could not find it ) and the cancer was not in the skin, which was probably some of the best news one could hope for. My surgeon and oncologist were ecstatic over that. I was also graded down....stage 4 to stage 3. Thanks for this list - it only pushed my determination to beat this totally, up another notch!   Hang in with me Ladies!

You gain strength, courage, and confidence by every experience in which you stop to look fear in the face. You must do thing which you think you cannot do. Eleanor Roosevelt
Diagnosis: 10/30/2008, IBC, 2cm, Stage IIIa, 6/10 nodes, ER+/PR+, HER2+
kgrennan
Joined: Aug 2009
Posts: 5
Sep 29, 2009 11:40 am kgrennan wrote:

How does one get graded down?  My wife is somewhere between stage III and IV.  It's complicated and I truly don't understand.  Her only sign of mets is a rouge lymph node on the other side.  Even the doctors we've seen don't agree with what that means.  Is there a chance after chemo she too could be dropped to stage III?
Gg08
Bonnie
Joined: Aug 2008
Posts: 669
Sep 29, 2009 07:04 pm, edited Sep 29, 2009 08:22 PM by Gg08 Gg08 wrote:
This Post was deleted by Gg08.
Gg08
Bonnie
Joined: Aug 2008
Posts: 669
Oct 23, 2009 12:57 am, edited Nov 9, 2009 04:42 AM by Gg08 Gg08 wrote:
This Post was deleted by Gg08.

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