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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Our "Central Address Book"

Topic: Our "Central Address Book"

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Jul 16, 2008 10:31AM - edited Mar 6, 2012 12:46AM by Moderators

nowheregirl wrote:

Hi everyone,

As I posted the other day, I was trying to make a list of our stage IV sisters with their contact information including their emergency contacts. Been working on it and finally I can tell you that it's done! The only difference between what I originally suggested and what now I think is that I would want this to be available for everyone (not only stage IV sisters but everyone on these boards) who wants to join. I have already contacted Melissa and made sure neither making the list nor posting about it is against the rules. So now it's official. I will explain how this works.

      

The link to the website is http://tkt.hostned.ws/cgi-bin/AddrBook/addybook.cgi

             

On this page, you post your information by yourself. Of course you can see all the information posted on the page as well so that you can send stuff to those in need or do a card shower. It is easy as pie so do not worry. I have prepared several fields where you can fill in the information about yourself. Some of them can be left blank if you want. If there's anyone in particular who you communicate with here on BCO and would want them to contact you or your emergency contact if you went MIA, you can specify the name of that person and notify them of that. If you are registered by someone else as their contact person, you will check in with that person and give us an update if asked.

                
To protect information from identity theft, this website is password-protected. You need to PM nowheregirl (formerly Timtam) for the details on how you can gain access. YOUR USERNAME AND PASSWORD THAT YOU ARE USING HERE ON BCO DOES NOT WORK. (Do not PM nowheregirl with your information. You need to post it by yourself.) However you will not be given the details unless you are either:
1. a member of these discussion boards on BCO of 6 months+ and have made 30+ posts
2. a member of these discussion boards on BCO of 2 months+ and have made 40+ posts

           

I apologize that this may sound a little too unfriedly to those are new here or haven't posted much but as a person that manages everyone's personal information on this website, I am responsible for protecting their personal information from being disclosed to an unauthorized third party. Your understanding will be appreciated.

         

I hope this help us unite as a worldwide family and make our bond even stronger. PM me for the details or any questions.

         

Hugs,

Fumi

       

[edited on 7th Sept. 2010 to change the URL]

(edited by Mods to update Central Address Book contact info)      

Dx 7/7/2005, IDC, 3cm, Stage IIB, Grade 1, 1/9 nodes, ER+/PR+, HER2- Chemotherapy 7/8/2005 AC + T (Taxol) Hormonal Therapy 3/10/2006 Surgery 3/22/2006 Lumpectomy: Right Chemotherapy 4/7/2006 Taxol (paclitaxel) Radiation Therapy 8/21/2006 Breast, Lymph nodes
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Jul 18, 2008 04:50AM ozzie2 wrote:

Good idea Fumi  have PM u...

hugs

oz

DCIS and IDC 96. ER/PR + HER2- bone skin mets06 ,Lung mets May08
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Jul 18, 2008 07:08AM Bugs wrote:

Fumi,

You are an awesome woman for doing this. :)

Bugs

Dx 2/1/2006, IDC, 6cm+, Stage IIIA, Grade 3, 3/16 nodes, ER+/PR-, HER2-
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Jul 18, 2008 08:30AM Fitztwins wrote:

I would love if we could add pictures. Just one of us. not pets, not kids, just us.

Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/18/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 1/31/2005 AC + T (Taxol) Radiation Therapy 4/30/2005 Breast, Lymph nodes Targeted Therapy 5/31/2005 Herceptin (trastuzumab) Hormonal Therapy 12/31/2005 Femara (letrozole) Hormonal Therapy 6/1/2008 Aromasin (exemestane) Targeted Therapy 6/30/2008 Herceptin (trastuzumab) Hormonal Therapy 6/14/2013 Arimidex (anastrozole) Targeted Therapy 9/4/2015 Perjeta (pertuzumab)
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Jul 18, 2008 11:57AM katie11 wrote:

Fumi,

This sounds fantastic!  Thank you so much for setting this up - I will be sending a PM!

Katie xx

Hope for the best, prepare for the worst! Dx 7/15/2006, ILC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2-
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Jul 20, 2008 07:14AM JoyRebecca wrote:

Fumi,

What a great thing it is for you to do this!! Thanks so much!

XX

Joy

Dx 5/5/2007, Stage IV, mets, ER+/PR+, HER2-
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Jul 21, 2008 08:17AM waterlily wrote:

Thanks, Fumi!

waterlily - Since we're only here for a while, we might as well show some style - JT Dx 6/2005, ILC, 2cm, Stage IV, Grade 3, 13/18 nodes, mets, ER+/PR-, HER2-
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Jul 22, 2008 02:58PM mom2acat wrote:

Thank you! I just pm'ed you

Original dx stage II, May 2003; bone mets April 2007 Dx 4/8/2007, 5cm, Stage IV, Grade 2, 5/19 nodes, mets, ER+
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Jul 23, 2008 08:26AM - edited Jul 23, 2008 08:27AM by Irina

SmileThank you (((HUGS)))
Dx 2/2004, 4cm, Stage IV, 5/0 nodes, mets ER+PR+HER2- Dx 2/2004, IDC, 4cm, Stage IV, 5/0 nodes, mets, ER+/PR+, HER2-
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Sep 3, 2008 11:40PM AimeeFaye wrote:

Hi Timtam: I can PM you cause I have enough posts now....wow I didn't think my chemo brain would allow me those many thoughts!  And...I still may not have got this process right... how can an intelligent woman turn to mush in so short a time...oh well, that's why God made post it notes..... see, too many thoughts tonight!!!  Thanks for setting up the Address Book,

Deb

Aimeefaye Dx 4/25/2008, IDC, 2cm, Stage IV, Grade 2, 12/16 nodes, mets, ER+/PR+, HER2-
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Sep 26, 2008 11:01PM Ter wrote:

hi timtam,

your awsome, i remmeber LONG ago like years, we started this and can remember "things" that blew it up, but your so good at doing things like this it will work.

I started and did mine with a few here on the site along with my sister who has their phone numbers and emails etc, and she knows how to contact them immediately, and yes there were times she called them, and yes I love being even closer to so many sisters here.

Plus what i did as i have made a "just in case something happens to me" directory, names addresses and phone numbers of who to contact and this sites address and how to join etc.

A couple years ago i was going out of state to see my sis and 2 gals from here live about 3-4 hr drive, and there were 2 gals who didnt know each other except seeing the others posts, well, they got together they were like one hr away from each other and one drove to meet the other and then took the long drive to meet me..oh it was a glorious day up in Wash State, as my own sister went out and got goodies for food and made up a platter of food and breads etc, was a beautiful day outside, and it was one of the best days of my life meeting these 2 BC sisters, and yes when the day was done as they had to get back home, there were alot of tears and we couldnt quit hugging each other.   A day I will never forget....oh well until a couple other gals from here after we lost one special BC  sis we lost one morning and i got a call from someone i didnt know well but she was already driving a few hr drive to come to see me, as she knew Janelle and i were very close, and that too was a great day, just by contacting people, you do become close, this has happened a few other times, just days i will never forget,

so gals, get your infio in this, you never know when you might need a friend at home, or visa  versa.

timtam, your great!

hugs

Ter

It's better to be effective than it is to be right.-
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Oct 9, 2008 06:35AM Susannah09 wrote:

Can't seem to log into the Central address book.  Just signed up.  Any help?  Thanks so much for doing this.  Susan

Dx 9/9/2008, Stage IV, 0/10 nodes, mets, ER+
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Oct 15, 2008 11:25AM rumoret wrote:

I can't get the username and password to work. Need advise.

Terry 

Hugs to my Sisters, Dx 4/13/2006, IDC, 2cm, Stage IIA, Grade 3, 0/15 nodes, ER+/PR+, HER2-
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Oct 15, 2008 11:50AM LuAnnH wrote:

email timtam she is the one controlling this address book

LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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May 22, 2009 02:48PM Analemma wrote:

I think it's time to remind everyone, especially Stage IV ladies, to join the Central Address book.  I was looking on it today for Stephanie - TripleNeg, but she's not there.  This is how I made contact with Suecco's husband and found out that she had died earler this month.  It would be so great if we had an emergency contact that we could email when someone goes missing.  No one even knows for sure where Stephanie lives.

Email Timtam and she will tell you how to access the list and put in your info.

Brenda

Children are the living messages we send to a time we will not see. --John W. Whitehead Dx 12/10/2007, IDC, 2cm, Stage IV, Grade 3, 5/12 nodes, mets, ER-/PR-, HER2-
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Jun 10, 2009 06:17PM TripleNeg wrote:

I want to give my information but I don't know who to give it to. What's Timtam's email address? God is able, stephanie

"The girl who became emotionally distraught, and wavered at each new set of circumstances is now grown up, a woman who has learned to rely on God's sovereignty" Joni Eareckson Tada
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Jun 11, 2009 03:44PM sushanna1 wrote:

Stephanie,

Send Timtam a PM and she will send you the password so that you can add your information.

Sue

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Jun 19, 2009 08:46AM heatherpalmerton wrote:

Terry, I haven't been able to log on yo put my info on there either.  I think it is an awesome thing I would love to use it. I need help too. Thanks Heather

HEATHER PALMERTON Dx 1/18/2008, IDC, 2cm, Stage IV, Grade 2, ER+/PR+, HER2-
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Jul 28, 2009 01:33AM Ter wrote:

Hi Timtam,

I hope your doing fine, as I hadnt been online for so so long, with HP having my computer for at least 3-4 months, then it pooped out again...even my doctor said to me "Ter, how are you doing all this without your computer? as I know you rely on it with your group of BC sisters.  I told him it was very hard as my family, well parts of them think that if you have your breast removed that cancer is gone and you should be able to go back and do everything like you use to ...LOL

Anyway as of people to contact, its the same, my sister Suzie who lives up in Washington State, and old old members keep in touch with her, and Suzies email is:

Ronsuzron@aol.com    justs in case.  Also a person that knows how to get in touch with me is Celia.  I believe she has an 888 or something like that at the end of her name.  She also lives up in Wash..and we yak on the phone when time permits.

Well I had just wrote a very long new letter under recourrance and mets section and its time for me to hit the sack.

Lots of hugs to you and I do hope your doing well.

Myself and this new computer, ugh!  I got a notebook by Dell, its called a Dell XPS...I thought it would be an XP, but nada nada so i have alot to learn.

Shlalom

It's better to be effective than it is to be right.-
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Feb 25, 2010 01:49PM ejnova wrote:

how do i get on to this list

Dx 1/1/2010, 1cm, Stage IV, Grade 2, 1/2 nodes, ER+/PR+
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Feb 26, 2010 06:04PM - edited Feb 26, 2010 06:05PM by blondiex46

me too??

Sandy

Original 8/96 - 1cm, chemo, rads. Recurr..9/09...Mets to lungs, chest wall, lymph nodes under arm & chest, cervical & lumbar spine, ribs, hip. Femera, Falsodex, Zometa, Xeloda, Gemzar,Taxotere, Adriamycin,Havalen.WENT OFF CHEMO 7/20/14 Dx 9/1/2009, 3cm, Stage IV, ER+/PR-, HER2-
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Mar 22, 2010 12:26PM felicia0606 wrote:

Hello,

I am new here but I want to join those on the list. Do you think that is possible? I am a stage IV lady.

Felicia

My story at: feliciaenache.blogspot.com/p/p... Dx 6/26/2009, IDC, Right, 3cm, Stage IV, Grade 3, 3/16 nodes, mets, ER-/PR-, HER2+ (FISH)
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Mar 22, 2010 12:32PM lvtwoqlt wrote:

To get on this list you will need to send a private message to Timtam and she will set you up with a password and directions to get your information on the site, but as she said in the inital post there are a few requirements regarding length of time and number of posts on this site before she will grant you access to the address book site.

Sheila

Women are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt Diagnosed ADH Feb 2005, ADH Sept 2006 Surgery 2/11/2005 Lumpectomy: Left Surgery 9/9/2006 Lumpectomy: Right Hormonal Therapy 10/11/2006 Dx 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodes Surgery 5/31/2007 Mastectomy: Left, Right
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Mar 22, 2010 12:48PM felicia0606 wrote:

Thanks Sheila.

I saw in the first post of Fumi that are certain conditions . Because of this I asked if possible to join too.

My story at: feliciaenache.blogspot.com/p/p... Dx 6/26/2009, IDC, Right, 3cm, Stage IV, Grade 3, 3/16 nodes, mets, ER-/PR-, HER2+ (FISH)
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Mar 29, 2010 06:23PM pee wrote:

Me too.  How do I do this?

Love and Blessings, Pee Dx 12/24/2008, ILC, 6cm+, Stage IV, Grade 3, 6/6 nodes, mets, ER+/PR+, HER2+
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Apr 14, 2010 08:58PM tami444 wrote:

Okay I've had two glasses of wine and my ambien CR ... so forgive me if I am not that coherrent.  But I can't seem to join.  I have over the 200+ posts for 2 months, or some suct statistic.  I used my same username and password, but got an error.  What next?  I'll certainly give my hubby's infor for as an emergency contact ... Lyle, "Kent" Burkhart,   850.496.6652, lkb_1958@yahoo.com   He'd like to think that he's eight years older than me (true), but that he'll pass before me.  Not sure that will happen.  I had a scary episode last night .... thought I wouldn't make it out of the ER that night with less than a breathing tube.  Scarriest thing yet to date, but was a reaction to a new med.  Finally feeling normal ... had 2.5 glasses of wine to celebrate tonight!!  Good Night everyone.... I'm still here !!!!
Diagnosis @ 39 yrs old: Dec 2005, IDC, 8cm, Grade 3, R Mastectomy Jan 06, Stage IV, bone mets, ER+ PR- HER2+, chemo, rads, lymphedema, stacked DIEP Feb 08 Dx 12/21/2005, IDC, 6cm+, Stage IV, Grade 3, 1/13 nodes, mets, ER+/PR-, HER2+
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Apr 14, 2010 10:22PM AnnNYC wrote:

tami444, I'm sending you a PM

Dx 3/9/2007, IDC, <1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Feb 2, 2011 01:04PM Ronda50 wrote:

Well shoot a monkey - I better get busy posting. My problem is I get too caught up in reading the great advice and wonderful things these lovely ladies are posting that i feel I really have nothing to contribute.

Great idea tho and hope to be eligable soon.

Dx 1/30/2009, LCIS, Stage IV, mets, ER+, HER2+
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May 20, 2011 09:00PM vickib wrote:

Fumi - How are you doing? Sending prayers

Vicki B. Cincinnati, OH Dx 3/3/2006, IDC, 4cm, Stage IV, Grade 3, 12/17 nodes, mets, ER+/PR+, HER2+
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Jun 8, 2011 05:01PM - edited Jun 8, 2011 06:17PM by apple

This Post was deleted by apple.
peace and love, apple - ..... Mary Magdalen Dx 4/10/2008, IDC, 5cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+, HER2+
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Jun 9, 2011 07:14PM o2bhealthy wrote:

I would like to send a card to KK - may I please have access??? 

Michelle ~ DCIS and IDC - Thyroid Cancer dx 10-27-10, partial thyroidectomy 11-23-10 Dx 5/15/2009, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+ Surgery 6/23/2009 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 7/19/2009 Herceptin (trastuzumab) Chemotherapy 7/19/2009 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/12/2009 Reconstruction (left); Reconstruction (right) Hormonal Therapy 12/1/2009

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