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12-30-2007, 09:47 AM
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#21
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Senior Member
Join Date: Sep 2005
Posts: 312
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There is no way to adequately thank, Lani, Joe, Christine and all my fellow travelers
Lani
The fact that you take the time to address individual concerns is awesome. I try to scan your posts, but I know that in an emergency, if some new problem happens, I would not have the presence of mind to be able to go back and pick out the information at the time I may disparately need some direction. Perhaps I need a filing system. LOL I am sure I do.
The rest of you --THANK YOU!!!
Janet
Three years out and finally on the mend physically and mentally--fingers crossed!
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12-30-2007, 10:28 AM
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#22
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Lani,
I am a firm believer that God puts people in our path.
Thank you for a job well done!
Kind Regards,
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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12-30-2007, 10:40 AM
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#23
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Thanks Lani
This board is the first thing I read every morning and the last thing I read at night, and your's is one of the one's I look forward to reading.
Thanks again for all that you do.
__________________
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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12-30-2007, 11:40 AM
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#24
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Thank You, Thank You!
Lani,
I have always been in awe of your dedication to researching and posting so much pertinent info for us. You are a truly a gift to all of us.
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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12-30-2007, 02:14 PM
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#25
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Lani, I learn so much from your posts. I am always impressed by the high level of information you are able to find. You even try to summarize what there is to understand. It takes time, dedication to others and...intelligence!
Merci! Thank you!
Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex
12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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12-30-2007, 03:04 PM
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#26
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Senior Member
Join Date: Oct 2007
Posts: 47
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I, too, thank you Lani from the bottom of my heart. Your information has changed my life. All my best, Patrice
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12-30-2007, 03:17 PM
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#27
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Thanks Lani for all your wonderful posts that are so informative for us all.
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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12-30-2007, 04:52 PM
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#28
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Add me to the pile! Thank you Lani!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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12-30-2007, 05:57 PM
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#29
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Sharing the learning
Thanks for your enthusiasm and talents, Lani!
AlaskaAngel
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12-30-2007, 06:22 PM
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#30
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Another admirer!
Thanks Lani, you often amaze and confuse me but it's wonderful getting this info from you,please know it is appreciated.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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12-30-2007, 06:27 PM
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#31
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Add my appreciation, too, Lani! There are so many on this board who have been angels to me, giving so much hope and caring. I am grateful. Thank you all, and especially Joe and Christine. Hugs, Tricia
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12-30-2007, 06:33 PM
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#32
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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I want to add my name to the list too....so many times I have thanked these wonderful people to help us along. One of the first answers to a question was from Lisa and I thought this was a website that I would always visit. So positive, so helpful and SO MUCH INFORMATION! Becky is awesome too!
Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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12-30-2007, 08:00 PM
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#33
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Thanks Lani, keep those posts coming! I have learned so much from the information you provide. I'll be the first one to sign up if you ever decide to give us all a "class" on how to interpret the lingo used in some of these articles and abstracts.
Best wishes for the new year!
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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12-31-2007, 04:56 AM
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#34
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Many thanks Lani for digging up the relevant info for us and answering questions.
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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12-31-2007, 06:24 AM
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#35
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Lani,
I echo the sentiments of all those who have posted above. Thanks for all you do.
Hopeful
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12-31-2007, 07:41 AM
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#36
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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I must add my thanks, and wishes for a happy and prosperous new year.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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12-31-2007, 07:49 AM
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#37
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Senior Member
Join Date: May 2006
Posts: 93
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Lani,
Dittos to what everybody else has said.
__________________
Husband to Jill
Diagnosed 10/05, age 39
R Mast 11/05
Stage II N0
Her2+ er/pr+
Revision Mast due to positive margins 12/05
TCH Chemo started 1/06
Finished TC 4/06
Tamoxifen
Finished H 12/29/06
Currently NED
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12-31-2007, 11:49 AM
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#38
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Member
Join Date: Apr 2007
Posts: 7
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Thank you, Lani. And Happy New Year to all!
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12-31-2007, 12:05 PM
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#39
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Senior Member
Join Date: Jan 2006
Posts: 42
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I want to thank everyone responsible for making this the most helpful and positive website. I have learned sooooooo much here and it is so important when talking to my doctors. thank you all a thousand times.Leslie
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12-31-2007, 12:07 PM
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#40
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Lani...
Santa's sleigh is fixed and boy do I have my hands full. Talk about keeping me busy reading all the new Male Breast Cancer information!! The best part is that Ed has been quiet reviewing the last batch of information and I KNOW HE WILL BE QUIET FOR A LONG TIME reviewing the newest gifts!! He was so cute too, reading in his glasses that make him look just like Santa (Christmas he wore his hat out to chemo and while opening gifts with his granddaughter!). I asked him if he understood what was in front of him. He quoted ME when he said "Whaaaaat?" I told him to go slow and dissect it all and things would make sense; he did and it was my chance to remind him of why I am the boss!! LOL!!
During the time I have spent here you have always come to our rescue. The latest research, the information and time, the unconditional devotion to us here is one of the greatest gifts. You are a very important family member to us here at Her2 and before I grew most of the posts were confusing. By dissecting them myself and learning all I could about BC, I can now read and absorb. The person I am today who is knowledgeable about BC has to thank you personally. With your help and the help of the family I have found here have empowered me so very much. Now how can you say thanks to that??
Prayers and wonderful thoughts for you today and always. May 2008 give back to you what you give to others!! Respectfully>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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