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11-21-2007, 08:39 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
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ditto
This site gives me more support than all the rest of my support groups combined. Thankyou .......thankyou..thankyou Joe and Christine and everyone who has replied to my posts or posted info.
jackie (down under)
6.8 yr survivor 26 months NED after liver met
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11-21-2007, 09:48 PM
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#2
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Joe and Christine, please know that almost 100% of her2 members are deeply in debt to you both for all the hard thankless work that you do for all of us. You definitely have the upmost respect from the majority of us and we are forever grateful. I don't know what happened but it must have been something so awful for you to get so upset. Please know how appreciated you are. I don't know many who would dedicate themselves to so many. You are one in a million for sure. So sorry this happened.
With endless gratitude,
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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11-21-2007, 10:19 PM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 476
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Please allow me to add my appreciation to Joe and Christine for their hard and dedicated work. This group will be physically and emotionally lost without them.
As to the unfortunate event that upsetted so many of us, I believe none of the people had the intention of hurting anyone. When an argument got intensely hot, they just became out of control. We should forget and forgive what happened. The past will serve a good lesson to all of us that tolerance and respect should occupy a high level of priority in any discussions.
Thanks to all who posted or had the urge to post on the eve of Thanksgiving.
__________________
Ann
Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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11-21-2007, 10:56 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Dear Joe and Christine, thank you so much for all of the work you do to maintain this most important link to my sanity! I must have missed the post that you are talking about. I would be lost without this support group so I hope nothing happens to cause you to shut it down. Thank you from the bottom of my heart for all that you have done and, hopefully will continue, to do.
__________________
 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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11-22-2007, 12:39 AM
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#5
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Senior Member
Join Date: Mar 2006
Posts: 78
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Dear Joe & Christine,
Thank you for your dedication to this website and for stepping in and helping us refocus our energy.
__________________
G. Ann
DX 2/04, mastectomy, 2.5 cm tumor, grade 3
Her 2 positive, 60%, 3+/strong, ER/PR-
Stage 2, 0/18 nodes
TX 4 AC (no taxanes, no radiation)
Hysterectomy 10/04
Began Herceptin 1/06, finished 1/07
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11-22-2007, 02:58 AM
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#6
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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For Christine and Joe: thank you for all the energy you give to us, the HER2 Group. You, and all the HER2 women on this wonderful forum, help me to be stronger. I learn so much from this site on a medical standpoint and just as important, on a human standpoint. Joe, you are so right. 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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11-23-2007, 11:29 AM
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#7
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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I, also, must have missed the post you are talking about...but I know that I would be LOST without this support group. Thank you, Joe and Christine, for all that you do. And thank you, Her2 Sisters for being here for me...and hopefully I am here for you because we all need each other!
__________________
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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11-24-2007, 04:55 PM
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#8
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Senior Member
Join Date: Dec 2005
Location: Michigan
Posts: 230
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Joe & Christine - I don't know what happen nor do I care to. However, I echo all replies, this is a great board and we are truly grateful for all the time and effort you put into this. Thank you 100 times over.
Mary
__________________
Mary
Diagnosed 11/04 @39yrs. young
Stage IIB
2.5 cm, ER/PR- Her+++, grade 3
Partial Mast., 1/3 pos. node
1/05 full node dissection
4 A/C 4 Taxol DD, Herceptin 1 yr.
30X rads.
BRCA Negative
NED
Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all -Emily Dickinson
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11-24-2007, 06:55 PM
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#9
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Please Do Not Say You Do Not Care...
I hasten to insert that there was much invaluable information on the vanquished thread that has been eliminated because of malice. That is not a victory, nor a reason to feel glad. Additionally, when a person's feelings have been trampled upon, though a few came to speak out for what is right and to remind those who chose to be vindictive and attack on a personal level -- that is also not a time to say *I don't care* or *I am glad I missed it*! HE WHO ALLOWS OPPRESSION SHARES THE CRIME. To look the other way, to avoid unpleasantness, is to contribute to the perpetuation of offensive behavior, not to rectify it! This site depends on the civil behavior and respectfulness of all who come to post here and those who come to glean insight. The loving support found here, in addition to the wealth of information and experience, is what makes *this* HER2 SUPPORT group so unique and vital to so many people trying to get a foothold. Let us not forget this fundamental attribute, as we dip in here for comfort and direction... We each bear responsibility for this continual fountain of understanding and knowledge generously shared by those willing to bear their Souls...
Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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11-25-2007, 09:37 AM
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#10
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Senior Member
Join Date: Dec 2005
Location: Michigan
Posts: 230
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Andi,
What I meant was I do not care to read negativity it does not mean burying my head in the sand. And I believe others that said they "were glad they missed it" meant just that.
__________________
Mary
Diagnosed 11/04 @39yrs. young
Stage IIB
2.5 cm, ER/PR- Her+++, grade 3
Partial Mast., 1/3 pos. node
1/05 full node dissection
4 A/C 4 Taxol DD, Herceptin 1 yr.
30X rads.
BRCA Negative
NED
Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all -Emily Dickinson
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11-25-2007, 01:02 AM
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#11
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Dear Joe & Christine ~ thank you for everything you do!
I am so very new to this site and really have no idea what everyone is talking about... it's just that having recently gone from Stage 2 to Stage 4 Her2+++ BC - with bone mets.... I realise with my reading here HOW much I am going to need this site!
I have searched the net and there seems to be so much thought, compassion and hope here I really do hope you folks stick around and keep on keeping on! THANK YOU!
Blessings all
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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11-27-2007, 12:04 AM
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#12
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Hello Christine and Joe,
I am just beginning to get an understanding as to how it is through the efforts of the both of you that we have this supportive site to go to. It has truely been invaluable to me to have this source to go to. I thank you from the bottom of my heart for the work you have done to make this all possible for me and others like me. I never realized the extent of your efforts until I read this thread. I would like to make a donation to help you with your work.
Thank you from the bottom of my heart.
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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11-27-2007, 02:05 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Dear Joe and Christine,
I am in shock reading your post. I have happily only read supportive and informative posts. If anyone dared to say something ill of the site or you, I would be very angry.
Not having read these posts, I can only suggest that cancer can make you very moody and with depression you can enter a sort of "menopause craziness."
We all need you and this site so much. You are my best support group and the information I have learnt has not only helped me but my other friends off-line with HER2 and inflammatory bc.
I really don't think I would be alive today or feeling so good without you and this site.
The thought of death is sometimes overwhelming and people react differently. Some people believe in God, some don't or have given up hope, some believe in positive thoughts, some just want the scientific facts, some need to vent about their personal problems and family, some hate that.
What we all should remember is what our parents taught us: "If you can't say something nice (or helpful), don't say anything at all."
Even surrounded by good friends and family, there are times we feel alone and our feelings are complicated.
I know I appreciate this site particularly because I can talk to "friends" who have or are going through what I am and that is an invaluable help. I live in France and yet I feel so close to all of you. I hope sometime I will meet you face to face.
I love you all and hope for your recovery and that you never suffer pain.
love and hugs
sarah
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11-27-2007, 11:15 AM
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#14
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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It Really Does Take A Village!
I have noted since early childhood that GOOD THINGS ALWAYS COME OUT OF BAD. I try to remember to remind myself of this when horrid inexplicable things occur. Once again, out of something disheartening and painful have come beautiful realizations, deepened appreciation and important awakenings -- to bless us all. The more painful the Lesson, the greater the reward. I hate that reality, but it gives me something to hold to when I feel adrift. Today, I feel renewed joy in my heart for us all! Together, we can weather any storm. Survival is a group effort. Surely, doing so and thriving depends upon that.
With much loving energy to Joe, our Christine and all my Sisters and Brothers...
Andi 
Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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11-27-2007, 04:32 PM
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#15
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Senior Member
Join Date: Jul 2006
Posts: 869
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Joe and Christine, I have been a bit off lately due to my mastectomy Nov 8...not sure of what you are refering to, but please know you 2 are like a lifeline to me. I appreciate this website so much. Ceesun aka Cathy
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11-27-2007, 06:35 PM
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#16
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Dear Joe and Christine,
I owe my life, quite literally, to this site and that means you two! Just one more voice to the chorus, we love you and appreciate you more than you know.
<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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11-27-2007, 06:54 PM
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#17
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Senior Member
Join Date: Sep 2005
Posts: 232
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Lolly,
I am with you. I would not have known to fight for Herceptin had I not spoken to Christine.
Karen
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11-27-2007, 10:39 PM
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#18
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Senior Member
Join Date: Nov 2006
Location: Bedford, Virginia
Posts: 134
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Dear Joe and Christine,
Words cannot begin to express the gratitude that I feel for having the opportunity to share my concerns, my fears, my success stories, etc. I have a husband who is computer illerate, and I continue to marvel at the spouses, especially you--Joe, that are helping to improve the quality of our lives.
My Oncologist tells me that I am the exception, rather than the norm, because I am constantly questioning treatment and procedures. I have so much to learn from folks like you, Sheila and Kate. This weekend, we lost Nicola, who was an inspiration for us all.
I have a sister who is 16 years older than me, and there are none wiser. Time and time again, she has preached to me to "let go and let God." It is wonderful advise and applies in so many situations.
I am have been blessed. I count this website as one of my many blessings.
Many thanks for your heartfelt generosity.
Louise
__________________
- Diagnosis 06/06 - Stage II-A BC; BC was 2.5 cm, grade 2; ER/PR negative & HER-2/neu positive;
- Mastectomy w/ reconstruction (implant) in 09/06;lymph nodes - negative;
- AC/Cytoxin combo - 4 treatments (dose dense);
- Taxol/Herceptin combo- 12 weekly treatments;
- Completed chemo - 2/07; completed restruction 02/07; reduction of left breast.
- BRCA 1 and 2 negative - 6/15/07;DX high risk for distant recurrence
- MRI, 08/02/07 - NED
- 1 year Anniversary - 09/07; completed Herceptin 11/07.
- Mammo 02/14/08 - NED; MRI - 08/2008 - NED
- 2 year Anniversary - 09/08
- Mammo 02/09 - NED; MRI - 08/09 - NED
- 3rd year Anniversary - 09/09
- 5th Annivery - 09/2011 - NED
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12-01-2007, 03:09 PM
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#19
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I would just like to add how grateful I am for this site and the knowledge and support I have gained from it. Thank you, Christine and Joe!
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12-01-2007, 06:22 PM
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#20
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Senior Member
Join Date: Mar 2006
Posts: 1,843
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Thank you Joe and Christine for your wonderful efforts.
<img src="http://www.smiliegenerator.de/s31/smilies-21813.png" alt="Hail The Admin" /> |
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