| Keeping Your Mind Off of BC Fun things and posts that do not apply to BC |
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10-10-2007, 06:17 AM
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#1
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Wow !!
Christine and I returned yesterday from our visit to Washington DC and the East Coast and wish to share with you the following emails:
From Dr. D. Rucker, Medical Director of Siemens:
Christine, Joe,
Thank you for the immense effort to travel cross country and help in getting the story on breast cancer diagnosis and treatment out. I think everyone was touched by your reflections on the journey life has brought to you and it was certainly helpful to share this with the DC audiences that often forget that budget decisions have human consequences.
With all best wishes,
Don
and another from Dr. Walter Carney:
Christine and Joe. Thank you very much for your time and effort at the Advamed meeting. From all reports you were very effective in your comments and I think the folks at Siemens saw the importance of what you are both doing. You have certainly been an inspiration for many people with and without breast cancer.
Secondly, I hope you and Joe as well as any of your HER-2/neu Support group will be my guests for dinner at the San Antonio breast cancer meeting if you have time. It is the least we can do for all you folks do for othersAgain, thank you very much
Walt
Last but certainlty not least. Our mail was overwhelmed with memorial contributions on behalf of Ann-Michelle Higgins (Shell) who recently passed away. The organization has received over 80 checks totaling several thousand dollars. Our group will be expanding our outreach program and intend to participate in many more meetings and seminars in 2008. This support will go a long way in helping us.
We will be posting details of Symposiums and intend to pay the entire expenses of members who volunteer to represent the HER2 Support Group at these events.
Hugs and Warmest Regards
Joe and Christine
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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10-10-2007, 06:46 AM
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#2
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Senior Member
Join Date: Oct 2005
Location: Boise, Idaho
Posts: 758
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WOW is right!!!!!! Again thanks for all your great work and for this forum.
Love & hugs,
Marlys
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10-10-2007, 07:43 AM
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#3
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Christine and Joe,
Welcome home. Once again I am overwhelmed at what you do for this group. Thank you so much. I hope you had time to enjoy family and friends.
What a tribute to Shell. I did not know her. I am sure she would be pleased with the response and your plans for the use of the generous donations.
God Bless you both!
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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10-10-2007, 07:47 AM
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#4
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Christine and Joe
As always, thank you both for all you do for us....you have made a huge impact on many lives!
__________________
"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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10-10-2007, 07:52 AM
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#5
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Joe and Christine -
Happy tears! Thank you so much for making a difference!
Carolyn
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10-10-2007, 08:01 AM
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#6
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Thanks from Canada too
I will add my WOW!! Joe to you and Christine.
You are truly an inspiration to us all. When I was dx in October 2006, this website was truly a G-dsend for me.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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10-10-2007, 08:42 AM
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#7
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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Joe and Christine,
You two are an awesome team !!!
Thankyou for all you.
Maria
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10-10-2007, 08:47 AM
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#8
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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This site is...
THE BEST!!!!
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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10-10-2007, 09:06 AM
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#9
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Senior Member
Join Date: Oct 2007
Location: PA
Posts: 27
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Thank you SO much for your work, Joe & Christine. You will never know how many you have helped.
Re Shell, it turns out she lived very near me in PA. I only realized this when her name was shared on this forum and then I saw the article about her in our local paper which mentioned her request for donations to this group. What a strong and gracious lady she was!! Although I never knew her, I feel for the loss.
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10-10-2007, 09:11 AM
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#10
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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That is wonderful Joe and Christine. I look forward to dinner in San Antonio!
Shell had some amazing friends. She is in our hearts.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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10-10-2007, 09:22 AM
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#11
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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Thanks to you! Also, how can we let Shell's family know....
Dear Joe and Christine,
Thank you so very much for all you do on our behalf! You are amazing!
I was wondering if there is a way we can contact Shell's family to let them know how much she meant to us. I was so in awe of her accomplishments when I read the articles about her - this is a side of our family we don't usually get to see - until it's too late. Any ideas?
Thanks again, have a great day!
Donna
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10-10-2007, 09:41 AM
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#12
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Amazing, truly amazing!
Amazing that Shell's friends not only respected and loved her, but they carried through with her wishes to show their love. I sure hope she's dancing in heaven as she watches!
And once again Christine, you and Joe, are rocking this ol' world of BC with your commitment, kindness and charm! Thank you ever so much for being exactly who you are and for blessing all of us!
Mary Anne
__________________
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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10-10-2007, 11:22 AM
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#13
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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It can't be said often enough - you two are definitely the best and thanks goes out from the bottom of my heart.
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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10-10-2007, 01:21 PM
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#14
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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Great news, and thank you for all you do!
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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10-10-2007, 02:19 PM
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#15
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Senior Member
Join Date: Oct 2005
Location: Alexandria, VA
Posts: 197
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Congratulations!! Wish I had realized you were in my area
Hi, Joe, Hi, Christine...
That is FABULOUS..so sorry I missed catching up with you...sure our paths will cross again...
Best of luck for much continued success--no one deserves it more!!!
Gina
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10-10-2007, 04:15 PM
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#16
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Let me add my thanks to the many already given. I can't stop talking about both of you to everyone. It takes a special person or people to be this vested in helping others. Both of you truly are amazing. Thank you for all you do and have done for so many and for keeping her2 awareness a priority along with other bc.
With much admiration and respect,
Rina
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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10-10-2007, 04:27 PM
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#17
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Senior Member
Join Date: Jan 2007
Posts: 368
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I really am glad there's someone out there speaking up for us. Kudos to Joe and Christine for a job well done.
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10-10-2007, 04:27 PM
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#18
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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Magnificant news! When is the luncheon in San Antonio?
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10-10-2007, 04:46 PM
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#19
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Thanks
This is certainly great news. My daughter is trying to donate to this website through her work and hopes they will accept it. It would be great if we could organize a get together somewhere near Boston in the northeast. Since I teach and have to have weekly treatments it is difficult for me to get away. Nevertheless, I would love to go to one of those meetings.
Barbara H.
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10-10-2007, 07:15 PM
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#20
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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can't say it enough
Thanks for all you do Christine and Joe!
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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