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04-27-2007, 09:17 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Remembering Linda (and Al from Canada)
I have been thinking about Al from Canada and when I touched base with him he shared that today is exactly one year since his beloved Linda has passed. I just wanted to share this important anniversary with our Her2 family, she was such a beautiful and well loved woman. The hours that Al spent researching treatments for Linda, he also so kindly shared with the rest of us. Thank you Al for your generous sharing, peace be with you and may Linda continue to be blessed with love for her cherished memories.
When his life calms down a bit, Al says he will be back in touch.
Kim from CT
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04-28-2007, 05:11 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: melbourne, australia
Posts: 267
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Thinking of you and your family AL.
__________________
Christine
DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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04-28-2007, 05:31 PM
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#3
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Senior Member
Join Date: Dec 2006
Posts: 63
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Vetrans of the Her2 family
Thank you for reminding us of Linda. I too fondly remember Al's devotion. It is nice to remember her on this day. I hope that she is in a much better place.
Hugs,
Anne
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04-28-2007, 05:40 PM
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#4
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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God's multitude of blessings to Al and all the other Als who stand strong with their lady as she battles with all her might! Nothing blesses me more than seeing the love demonstrated through these hard times. Hats off to you Al and please be good to yourself just as you were to Linda who dances with heavenly angels now! ma
__________________
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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04-28-2007, 05:51 PM
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#5
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Kim,
Thank you for reminding us of this first year of Linda's passing.
I have often thought of her and Al this past year.
I hope that Al will visit with us and in the meantime I hope
he is able to enjoy some peace - this had to be a very difficult
year for him. He is such a good man and he and Linda will
always remain in my prayers.
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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04-30-2007, 07:50 AM
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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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BIGGG huggs
Al, it's been a rough year for you and your family. Your in my thoughts and prayers.
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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04-30-2007, 09:37 AM
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#7
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I am thinking of you Al and wishing you peace.
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04-30-2007, 04:07 PM
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#8
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Senior Member
Join Date: Jul 2005
Location: Ontario, Canada
Posts: 722
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from al
Thanks to all the courageous survivors who remember Linda's battle. Yes, it's been a year and no, the hurt doesn't fade. I have been reading the journal updates but haven't posted for a variety of reasons, none to do with anyone on the board. I find the pain to cancer too much to bear sometimes, and feeling all of you are part of my extended family, it got very painful. Linda's kids live with me, her daughter I am helping with her new (and successful) renovation business, her son, is in college becoming a chef, my son is becoming an accomplished musician, the grand daughter, and I am under constant pressure from the construction community to take-on new clients. In short, in order to get on with your life, family and sanity must come first. I do miss all of you greatly and hope my life calms down soon so I can help make a difference to this wonderful group.
Linda's resource centre was started this weekend and will be completed next weekend. After I assess the needs / shortfalls of our vision, I will looking for support, in terms of reference material, to help stock the new "hard copy" and digital library. The centre will be dedicated to Linda and will be called the "Linda E. Schmidt Patient Resource Centre". Linda's strength and giving was well known in our community and I only wish that she could be here now to see, first hand her kids' successes, and the support and respect her community has shown her. I will post pictures on the album pages soon when the centre is finished.
Love to all and thank you for thinking about us.
Al and kids.
__________________
Primary care-giver to and advocate for Linda, who passed away April 27, 2006.
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04-30-2007, 04:14 PM
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#9
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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Thinking of you and the kids and sending a lot of warmth your way.
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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04-30-2007, 05:36 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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It's so good to hear from you again, Al! Thanks, Mamacze, for sharing with us. We have all thought of you and Linda often, Al, and it sounds like you are now sharing all your love and abilities with your family and community. We all wish we could be there for the dedication of Linda's "memorial". What a wonderful way for everyone in the community to keep her---and you---in their thoughts and prayers. It will be a blessing for everyone. Best wishes, Tricia
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04-30-2007, 06:06 PM
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#11
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Al, thank you for the update and for sharing some of your inner thoughts and feelings. It's a tough old road, and you're doing a wonderful job of it.
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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04-30-2007, 08:50 PM
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#12
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Hi Al,
Thank you for your family update. This web site is the very best, and so are you, Linda and your entire family.
All the best, Catherine
P.S. My grandmother was born in Collingwood, Ontario and I was lucky enough to visit Ontario 3 years ago.
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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04-30-2007, 10:21 PM
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#13
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Hey Al -
Wonderful to hear that the resource center is finally under way. That has been a major undertaking to pull all the threads together. Hearty congratulations for your persistance and hard headed work ethic!
Can't wait for the photos of the opening. Maybe Joe and crew can find some materials at ASCO in June that will be appropriate - like educational CD's and various literature. The Canadian equivalent of the US National Cancer Institute should have materials as well.
__________________
"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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05-01-2007, 04:13 AM
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#14
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Good to hear from you Al
You are always in our thoughts.
I am glad to hear that you have been busy with your family (good medicine).
They sound like a great group and proud of them you should be. I am sure that Linda is looking down upon you and seeing what a good job you are doing and they as well.
Look forward to seeing the pictures.
You take care Al...and keep peeking in on us once in awhile. We would not want to lose contact with you.
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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05-04-2007, 02:06 AM
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#15
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Senior Member
Join Date: Nov 2005
Posts: 943
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Al, I'm glad you are moving forward and getting on with life by keeping so busy with healthy minded activities. Wishing you the best.
__________________
Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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05-05-2007, 11:05 PM
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#16
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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So very good to hear from you Al.
My very best wishes to you and your family.
Kim in CA
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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