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11-21-2007, 08:39 PM
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#21
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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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#22
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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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#23
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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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#24
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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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#25
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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, 02:38 AM
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#26
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Senior Member
Join Date: Apr 2006
Posts: 148
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I am a member of a UK breast cancer site where I derive much comfort and support, as well as giving it.
However, it is here where I come to find out all the latest news on HER2. This I then give to my medics in the hope that they will take notice.
So thank you from me, too. I genuinely believe flaxseed is an important natural inhibitor of HER2+ cancer, and this I learnt here.
Mcgle (UK)
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11-22-2007, 02:58 AM
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#27
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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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11-22-2007, 03:46 AM
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#28
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Senior Member
Join Date: Apr 2006
Posts: 131
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Dear Joe and Christine:
I don't post often, but I do regularly read the posts.... I just want to say, I am so very happy to have found this place.. I want to add my thanks for such a place to ask, receive and get support. and advice from the great folks here..
The work you do is so very much appreciated...I thank you and Christine from the bottom of my heart.... please know that your work is appreciated...
I also would like to make a donation to the site.... I can"t get the link to work...On one of the posts, an address was mentioned.. where do I find that??? Could somebody help me.??? I guess I have chemo brain...???.
again, thanks so much for this site.. I have taken some of the posts to my Dr. and he sat there and read them .
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11-22-2007, 04:33 AM
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#29
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Senior Member
Join Date: Sep 2005
Posts: 414
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Hope you have a Happy Thanksgiving
Dear Joe and Christine,
I am very thankful for this site. I think that people don't fully appreciate the market value of the services you donate. I donate to a cancer support charity in the UK and they mentioned in their recent mailing how much it costs per hour to keep their website up and it was quite expensive (wish I could find it now, but no such luck). And the great thing about this group is that there isn't the us/them divide that you get with some chatrooms where the organisation leaders, who may be charity professionals rather than cancer survivors or people living with cancer, don't always seem to understand what things are like for people with cancer.
I hope that you have a very nice Thanksgiving.
Best wishes,
Christine MH
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11-22-2007, 04:52 AM
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#30
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Senior Member
Join Date: Sep 2005
Posts: 414
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I hope you have a nice Thanksgiving Day
Dear Joe and Christine,
I am sorry to hear that some people have been disrespectful.
Recently I received a mailing from a cancer charity I support in the UK and was shocked to learn how much it was costing them an hour to keep their website up. I had never really thought before about how much a website like this one costs to run. It made me really appreciate all that you do.
I guess the thing that I think is so great about this website is that it is run by people who have been directly affected by cancer. Charity professionals are great, but sometime they don't always understand where we are coming from. Also, that this website does so much to help defeat this type of breast cancer by publicising trials and new developments.
I hope that you have a great day with your family.
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11-22-2007, 05:10 AM
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#31
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Thanks wholeheartedly to Joe & Christine
I think I know which thread Joe deleted. I replied to it before the comments fired up. Have not been able to follow the last couple of days, but it WAS getting beyond "polite discussion."
The empathy and civility of the members here has always been one of this site's hallmarks, and I am glad to see that we do not NEED monitoring as a matter of course. The fact that Joe can feel at liberty to go about his business and trust that what is taking place here is non-threatening to anyone, yet honest, is a testament to the members.
We all come from different places and backgrounds to arrive here at a commonality with a terrible disease. Naturally we all have opinions on most everything, and our own ultimate truths, which may or may not be open to change. The only change we should be thumping for is a CURE!
__________________
"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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11-22-2007, 05:57 AM
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#32
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Joe and Christine
I have been a member of this group for over 4 years, and I have seen differences in opinions, ideas etc. It is OK to have our opinions, we are all unique, as is our breast cancer...what works for one, won't work for another...one is taken and yet another lives on....but in all of this, we must never forget the reason this board was started by Joe and Christine...to help each other....with respect, knowledge and genuine compassion. This board has been a lifeline to me, don't know where I'd be without it.
Thank you Joe and Christine ...you are a lifeline
__________________
"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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11-22-2007, 02:10 PM
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#33
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Thank you Joe and christine, I don't post as often because of the remarks that are at times so very hurtful. And my husband suggested I drop out of this site because of it, but I have always been a believer in the goodness of all. Thank you for your concern and for taking a step toward ending the bitterness. Much love, Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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11-22-2007, 03:19 PM
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#34
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Senior Member
Join Date: Aug 2006
Location: Poland Ohio just a little south of Youngstown.
Posts: 473
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Joe and Christine, I'm so sorry for whatever happened, like most of the others, I'm glad I missed it. I wish that I could put into words what this site has done for me, I would be lost without it. I occasionally visit other boards but this is the Her2 site, there's nothing out there like it. I've learned so much and have been hugged and helped by so many. I pray that whatever happened will be the end of the nasty times. We all love you so much!
Hugs
__________________
Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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11-22-2007, 05:21 PM
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#35
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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Thank you, thank you, thank you! I've learned a lot from everyone here!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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11-22-2007, 07:51 PM
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#36
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Thank you Joe and Christine.
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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11-23-2007, 07:53 AM
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#37
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Senior Member
Join Date: Jan 2007
Posts: 144
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Where would I go?
Joe and Christine- I am sure you both must know that this board has "saved" so many women from the terror and fear that HER2 breast cancer can cause. I am a case in point. Without this board I would feel unarmed and ignorant of the knowledge I need to fight this never ending battle. I too, have tried the link to make a donation and been unsuccessful. I will try to find the address since someone mentioned it.
I would like to say "Thank you" from the bottom of my heart for allowing me to come to a place that can give me peace, love, knowledge, courage, and faith that we are going to beat this disease.
I don't know what thread you are speaking of, but I hope we can all remain calm, and focus on the purpose of this board.
Thank you again Joe and Christine for being there for all of us.
Happy Holidays to all,
Emelie
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11-23-2007, 11:29 AM
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#38
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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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#39
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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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#40
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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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