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06-15-2006, 11:32 AM
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#1
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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***Joe And Christine...DO NOT READ THIS POST...please***
I found this post and found it interesting that 12/24/06 will be the 5 year anniversary of HER2support.org, email me hoffman_brown@comcast.net with your thoughts and ideas, I don't want private msgs as NOSEY  people can pry.
Rhonda
http://her2support.org/vbulletin/sho...highlight=2001
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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06-19-2006, 03:16 AM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Change the post title ...
... if you want input from the board members.
A 5-year "something special" is a great idea, if that is where you were going with this.
I will put that date on my calendar. IT will be shortly after the San Antonio Symposium in mid - Dec.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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06-21-2006, 11:12 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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great idea. will write you a pm.
sarah
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09-28-2006, 02:35 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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I'm bumping this up to see if anyone else...
has any ideas (I have been given a few good ones, but will post them when I have a few more). Take care and God bless.
Rhonda
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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09-28-2006, 10:57 AM
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#5
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Now, Rhonda if that was me and I saw a post like that "Do not read" I would die of curiosity and guess, what I would have to read it. It wasn't even for me and I couldn't wait to see what it said! hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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09-28-2006, 05:44 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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I know, I know Sandy...
but what else was I to do Take care and God bless
Rhonda
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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09-28-2006, 06:30 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Los Angeles
Posts: 430
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we must celebrate them. where would we be without this page?
very thoughful Rhonda.
MCS ( maria)
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09-29-2006, 01:51 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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I know that celebrating them is a great idea but... My opinion is that all not-for-profits need cash. Would it be prudent to ask members to make a simple contribution of say, $20 a person to HER2support.org ? Or more if they wish...
There is info on the home page of what to do if one wants to make a donation. I have worked for not-for-profits most of my professional life and funds are most important in keeping them going.
What do you all think of a little fund raiser for them? You know they will never ask.
Maria (MTS)
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09-29-2006, 02:07 PM
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#9
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Not for profit orgs always are in need of donations. I would be nice if we could just make one donation from the entire HER2 family as opposed to donations from everyone.
P.S. I'm with Sandy -- if it said don't read rest assured I'd be reading it.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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09-29-2006, 03:00 PM
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#10
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Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
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I don't have any great ideas but would love to help out in any way I can.
Karen
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09-29-2006, 04:20 PM
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#11
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Senior Member
Join Date: Dec 2005
Posts: 274
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Count me in
Hi Rhonda,
Please count me in on whatever decision is made.
Sincerely,
Liz J.
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09-30-2006, 05:35 PM
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#12
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I am short on ideas, but am willing to participate in anyway I can.
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09-30-2006, 09:08 PM
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#13
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Rhonda,
I've been thinking more about this subject and the more I think the more I believe that if we are to do anything it should be something personal for Joe and Christine. I'm short on ideas of what, but something that they can cherish for a long time to come. My cognitive thinking is not quite up to par right now but I will try and get it working and try to come up with some suggestions. It definitely should have something to do with HER2 breast cancer. Perhaps we could find someone to design a specific item for us. I'm rambling here.........
Rhonda, You're a very thoughtful and caring person. Most of must here didn't even realize how long this site has been around. Without this site I don't know where I'd go to get all the information I do and learn from the experiences of others.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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10-02-2006, 03:47 AM
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#14
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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count me in. just let me know what you want from me.
such a great site!
sarah
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10-03-2006, 05:30 PM
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#15
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Senior Member
Join Date: Sep 2005
Location: Los Angeles
Posts: 430
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How about writing letters to Ellen Degeneres about Joe and Christine. She does special shows for a week long Xmas and it would be very wonderful to recognize them.
I'd be happy to send all our letters together or get an email address and put it in here for us to send to the show.
XOXO
MCS (maria)
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10-03-2006, 07:44 PM
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#16
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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How about a plaque of recognition from the Her2 support? Just a thought as I am not good with ideas like this. I will be happy to support what you decide to do just let me know. I really would love to have us ALL celebrate a surprise get together near their place and present them with the plaque but that is wishful thinking! Now, wouldn't that be awesome? hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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10-03-2006, 09:32 PM
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#17
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Maria - I think that's a great idea! It sure would be a way to educate women and at the same time promote the website and give Christine and Joe the recognition they so deserve. If it is decided that we try this we should really start advocating now.
Sandy - A plaque is another wonderful idea.
I'm short on ideas since the brain isn't working up to par (Herceptin brain??) but when a decision is made I definitely want to be involved.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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10-08-2006, 01:12 AM
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#18
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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All your ideas sparked another thought - I don't think there is time to put it together for this year but....next year. and it couldn't be a surprise.
What about putting together all the inspirational stories of people and what they've been through - plus information about HER2 and make it into a book and see if we can't get it published some way with the profits going to this website???? It would be time consuming and difficult to get published but you never know. Obviously it would have to be something Joe and Christine wanted to do.
sarah
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10-09-2006, 09:00 AM
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#19
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Rhonda
Great idea...I feel like a donation to the Her2 Support Group would be great (we all benefit from that) and something personal to recognize Joe and Christine for all they have done for each and every one of us...could both be achieved? I am willing to help in any way possible....if we were goiong to do the donation thing, I am more than willing to take charge and record/deposit the funds....just let me know what you need/
__________________
"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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