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12-24-2006, 06:06 PM
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#1
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Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
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December 24th 2001
Just 5 short years ago, if you were dignosed as HER2+, your oncologist would tell you "your cancer is aggresive and your prognosis is poor". If you were stage I to III, you had to wait for a recurrence before he would give you Herceptin. There was a myth that it caused heart attacks. In 2001, if you were diagnosed with brain mets, your survival was measured in months. There was very little information on HER2, Herceptin, or metastatic breast cancer on the internet.
Today, thanks to dedicated researchers we have turned the corner. Women who are HER2 positive now have a better prognosis than those that aren't. Tykerb another targeted therapy drug should be approved by the FDA in February. Great strides in HER2 vaccines are being made at Walter-Reed Medical Center and at the University of Washington. There are many new compounds in the laboratory ready to enter Phase I trials.
The HER2 Support Group met the challenge. Through our website, we have recruited numerous candidates to participate in various clinical trials, including 1 in the Phase I trial of Tykerb, several in the Walter Reed trial, 10 out of 20 for the Phase I trial of the vaccine in Seattle, and numerous candidates for the adjuvant trials of Herceptin here and overseas. Our members are the most educated of all breast cancer survivors.
Personally, 2006, was a terrible year with the loss of Lyn, Lisa, Hope, Janelle, Linda, Sherry from WV and others. Each passing makes the operation of this website just a bit harder.
But on the other hand, we received glowing reports from many oncologists that we met in San Antonio this month. Dr. Lupe Salazar could not speak highly enough about our "hospitality volunteer" in Seattle - Stephanie. Sassy's oncologist told us how Sassy was so informed that it made her visits with him - most enjoyable. Perhaps the greatest compliment was given at ASCO in June, when Dr. Mark Pegram referred to us as the "HER2 Support Group activists" before an audience of about 1500 fellow medical professionals.
Joe and I receive too much credit for this website for it is all of the members who help to make this website the leading resource for HER2 breast cancer patients in the world. We just built the forum, it took all of you to fill it.
We wish to thank each and every one of you for without your active participation, the HER2 Support Group would not exist.
Hugs, well wishes and happy holidays to ALL.
HAPPY FIFTH ANNIVERSARY
Christine and Joe
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12-24-2006, 06:33 PM
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#2
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Senior Member
Join Date: Sep 2005
Posts: 232
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Christine and Joe
A millions thanks to both of you.
Happy Holidays to you and your family.
Hugs,
karen
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12-24-2006, 08:49 PM
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#3
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Thank you doesn't seem like enough, but, THANK YOU!
Happy 5th anniversary and Happy Holidays!
Carolyn
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12-24-2006, 09:05 PM
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#4
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Thank you. Youv'e taken on lots of extra work for our benefit. Happy Holidays. Bev
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12-24-2006, 09:38 PM
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#5
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Senior Member
Join Date: Oct 2005
Posts: 823
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I want to thank you both Christine & Joe for starting forum. Before I found it, I didn't think there was hope, and now I know different.
Just being connected with everyone on this forum has meant the world to me.
THANK YOU, THANK YOU.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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12-24-2006, 11:20 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Spokane/Warden, WA
Posts: 67
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Christine and Joe
thank you for helping to save my life.
dee
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12-25-2006, 04:48 AM
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#7
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Thank you!!!
HI Christine and Joe,
I can never thank you enough for managing this website. It is my lifeline to information, support, and to others like myself who are dealing wiht HER2 breast cancer at some level. No words can express my appreciation for your dedication and help and support.
Thank you and I wish you all the best to your family during this holiday season and the New Year beyond!!!!
Barbara H.
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12-25-2006, 06:32 AM
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#8
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Christine and Joe
Thanks to both of you and all the other amazing women on this board, I plan to be here to celebrate my 5 year anniversary in Feb. I was one of those given a poor outlook in early 2002, and with all the knowledge from this board, I am still going strong.....Merry Christmas to ALL!
__________________
"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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12-25-2006, 08:03 AM
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#9
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Again another thank you for all you do for us. This is one of my lifelines. Nearly, 6 years ago, diagnosed with IBC and her2, I was given no long term survival from several doctors. Well, today I am happy to say I am still hear and I do consider 6 years in March long term! My quality of life is good and I am enjoying every minute of it. Christine is right we have come a long way and will continue to do so. Sending you all a big Christmas hug and a Happy healthy New Year. I said a prayer last evening for all our families on this board who are with out their loved one today. 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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12-25-2006, 11:17 AM
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#10
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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I want to thank you from the bottom of my heart for all you do to keep this website up and running. I also want to thank all the wonderful women here. Since I really do not have anyone that I can personally lean on for support, I surely would have lost it many times if it had not been for the wonderful support, advise, and knowledge of the women on this website. I wish everyone here a Very Happy Holiday and a Happy, Healthful, Prosperous New Year.
__________________
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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12-25-2006, 12:59 PM
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#11
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Senior Member
Join Date: Nov 2005
Posts: 943
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Thanks Christine, and a very Merry Christmas to you and Joe.
__________________
Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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12-25-2006, 02:17 PM
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#12
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Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
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Thanks so much Joe & Christine for this site. It, too, has given me much hope. Best of everything and Merry Christmas!
__________________
Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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12-25-2006, 03:38 PM
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#13
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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5 so important years!
Thank you for stepping out and leading the way for all of us! This site has been a life raft to me each and every day! It educates me, inspires me, and helps me make each tough new step so much easier! I have a friend just diagnosed with thyroid cancer, just as her son turns 4 months old! As I wrote a note to her, I reflected on how important this site has been to me and encouraged her to go on line and seek out lots of ideas and help! Thank you for 5 years that has and will continue to change so many lives. Merry Christmas!
__________________
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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12-25-2006, 03:52 PM
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#14
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Senior Member
Join Date: Sep 2005
Location: .
Posts: 211
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Dear Joe and Christine
thankyou so much for this site. For me personally it has helped inform me ( I am in Australia) of what is happening in the Her2 world. The wonderful people on this site have helped advise me , comfort me and support me at difficult times.
i have found it particulalry sad this year with the loss of women I had grown to love.
Thank you again
Linda w
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12-25-2006, 07:24 PM
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#15
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Senior Member
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
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Thank you again to the superb team! Wishing you the best for holidays.
Big hug,
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12-25-2006, 07:30 PM
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#16
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Dear Joe and Christine,
Thank you so much for the information that you share with us. 16 mos ago I was diagnosed w/ her 2 pos bc. I was sure that my life was over then and there. Having her 2 support has been a lifeline for me. I don't think I could have gotten through this as well as I have without your valuable site.
Losing our dear bc sisters has been awful tough to read. But, we are here to support each other in good times and in bad. My prayers are that 2007 will be a blessed year for each and everyone of us. You all are in my prayers daily.
Hugs and prayers,
Lexi
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12-25-2006, 07:47 PM
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#17
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Senior Member
Join Date: Nov 2005
Location: Hilton Head Island, SC
Posts: 279
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We have come so Far - thanks to people like you!
Thanks for the update that puts things into perspective Christine. I can't believe the changes that have taken place in just the short time I have had cancer. I long for many more changes - for the shot that prevents cancer in my children and their children's children... sigh. Keep up the good work, and thank you so much for your kind dedication to those of us you may never meet, but sacrifice for daily.
We are ever in your debt....
__________________
Kim
Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes
BRCA 2 positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara
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12-25-2006, 08:37 PM
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#18
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Senior Member
Join Date: Apr 2006
Location: Boston
Posts: 66
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Dear Christine and Joe,
Thank you for your eloquent Christmas/Anniversary letter to the Her2support community and all you do to stay on the forefront of medical advances and keep us all connected.
Congratulations for 5 years of providing emotionally and physically life-sustaining support through this exemplary website -- and many blessings to you in 2007!
Emmay
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12-25-2006, 11:15 PM
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#19
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Senior Member
Join Date: Jun 2006
Location: Grand Terrace, Southern California
Posts: 114
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Congratulation on your 5th anniverary for a successful forum, dedication, and hard work. I am truly bless to be apart of your support group. Thank you Christine and Joe.
Merry Christmas!
__________________
04/97- breast bx. diagnosis breast cancer.
05/97- radical mastectomy; 5cm tumor & 11 lymph nodes.
10/97- City of Hope, high dose chemotherapy.
11/97- 36 radiation therapy.
01/98- NED; tamoxifen.
02/02- breast reconstruction.
08/04- recurrence; mets to rt lung; thoracentesis; femara.
09/04- thoracentesis; ER/PR +, Her2+++.
10/04- total abdominal hysterectomy.
02/06- mets to 9th rib; monthly zometa; arimidex.
06/06- medi port insert; weekly herceptin.
10/06- 3 weeks herceptin treatment.
02/07- mets to liver; arimidex
11/07-liver clear
02/08-chemo taxol/herceptin weekly treatment
12/08-taxol not working
01/09-navelbine/herceptin weelky
03/09-navelbine not working
04/09-xeloda/tykerb
09/09-30 radation to neck; xeloda/tykerb not working
11/09-Gemzar/herceptin weekly
04/10-tykerb/herceptin weekly
06/10-cancer spread to left lung;stop treatment; tap
07/10-right lung collasps; TDM1
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12-26-2006, 12:10 AM
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#20
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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A bridge to sanity ...
Like Kate mentioned, many of us would have "lost it" if we did not have somewhere to turn for understanding and information. That includes me, and the hard part is that some of the women who welcomed me here and gave me some words of wisdom are no longer here in the flesh. But, there are others to come into the picture and who need the same help at various stages of their disease and treatment.
The cycle continues.
It is a very special sisterhood indeed, and I am honored to have a part in assisting anyone who comes to Seattle that I can make things a little easier or fun during what can be a rather stressful time.
We owe it all the Christine and her very "obedient" husband Joe, who put her idea into practice.
MERRY CHRISTMAS TO ALL AND TO ALL A GOOD NIGHT!
__________________
"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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