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Old 08-28-2010, 11:14 AM   #121
Colleens_Husband
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Re: Joe passed on this evening

I am so sorry to hear about Joe's passing. He was truly a saint. I feel that Joe's passing will inspire the HER2 community to finish what Joe started. My prayers go out to Joe, his family, and the whole HER2 community.

Lee
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This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 08-28-2010, 08:25 PM   #122
Barbara2
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Re: Joe passed on this evening

I cannot believe what I am reading. Joe...our Joe? Joe and this website have been a life saver for so many people and now we learn that he has passed away from the same disease he had helped us to battle, in countless ways. I am so very sorry. Joe's family was blessed with a one in a million husband/father and more. Praying for comfort and strength for all of you during this very sad time.
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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Old 08-28-2010, 09:49 PM   #123
harrie
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Re: Joe passed on this evening

I am in so stunned and in shock!! It has been a while since I have checked into HER2 and this was the first thread. My deepest condonlences to Christine, their children and family.
I will forever be in gratitude to Joe and Christine, how they have helped so many of us get through life when we most needed help.
May his love and spirit continue to always be with us.
...peace to you Our Man....
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*** 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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Old 08-29-2010, 03:18 PM   #124
newgg
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Re: Joe passed on this evening

Oh my gosh...prayers for Joe's family. Joe and his wonderful family and this board...a tower of knowledge and strength. " Gently, they go the beautiful, the tender, the kind...I know. But I do not approve. And I am not resigned. by Edna St. Vincent Millay.
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Old 08-30-2010, 07:44 PM   #125
rinaina
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Re: Joe passed on this evening

Dear Christine, Danielle and Deborah,
I am so sorry for your loss and all of our losses here on Her2 Support Forum. I had the pleasure of sharing company with you Christine, Joe and Deborah at the ASCO meetings here several years ago and what an honor it was to meet the wonderful people in person, those behind this important forum. Like many, I didn't know of Joe's diagnosis and in a way feel bad about that because, while I am sure he knew how much he was appreciated, it would have been nice to tell him one more time. I pray that all of you can find peace in knowing that Joe accomplished so much in his lifetime and leaves us all with such amazing respect for all he has done for so many. My heart goes out to all of you during this most difficult time.
With sincere condolences,
Rina Schneiderman
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~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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Old 09-03-2010, 07:07 AM   #126
Emmay
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Re: Joe passed on this evening

I was completely stunned to read of Joe's passing, and my thoughts, prayers and sincere condolences go to Christine, Danielle, and Deborah, who so generously shared their husband and father with the extended Her2support community.

My beloved younger sister passed away in August '09 after valiantly fighting the disease for 6 years, and it was the excellent information, support, hope, and love on this site that sustained me and so many others as we have struggled together with our loved ones against this disease.

I know all of us here wish we could have offered Joe, Christine, and his daughters the same kind of support he gave us through this website. He had such a gentle, kind, and wise way as he guided us and was forever looking for ways to improve the site, even when it seemed it could not possibly be any better.

Christine, Danielle, and Deborah, my deepest sympathy as you grieve Joe's passing from this world -- he is surely a powerful guardian angel now; his wonderful spirit will live on in your hearts and memories, and in the ongoing care, support and love that comprises her2support.org
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Emmay - My sister's history:
6/03 Her2+,ER-PR-Breast Cancer, IIb, 7/03 lumpec. rt.brst
9/03 Begin chemo-AC+T
2/04 Mastectomy for local recurrence
3/04 Begin Herceptin, 5/04 Rad to mastec.site
9/04 Recurring Headaches=brain mets
10/04 Craniotomy #1 - rem. 3 br. mets, 11/04 WBR
2/05 Begin Lapatinib(Tykerb) Clinical Trial
5/05 Craniotomy #2 - remove largest brain mets
7/05 Stereotactic Radiation to 2-3 brain mets
10/05 - 3/07 CyberKnife Radiation Treatments for sm brain mets as they arose. Cont. Herceptin
5/07 Begin Temodar+Sorafenib for brain mets
2/08 Begin Tykerb(Lapatinib)+Xeloda for br. mets
5/08 MRI&Biopsy shows ext.new disease, some necrosis
5/08 Begin CPT-11(Irinotecan)+Avastin for br.mets
6/08-4/09 MRIs look great! cont. Herceptin
3/09 Stop CPT-11, brain CTclear-some nausea,backpain
4/09 Scans=pleura,liver,bone mets.
New Rx Herceptin+Avastin+Xeloda
6/09 new Rx Carboplatin+Herceptin
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Old 09-04-2010, 03:45 PM   #127
StillHere
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Re: Joe passed on this evening

Dear Christine, Danielle & Deborah
Your husband/father was such a forward thinker and inspiration to everyone. I did have the privledge to speak with him over the phone on a couple of occations my first years as a member of this site. Although this great web site was a gift to Christine, in reality it was a gift to us all. Thanks to Joe and Christine, I was able to connect with my Her2 family when my family at home was snug in their beds. I will be sending a donation to this site in memory of your wonderful husband/father. I am so very sorry for your heartbreaking loss. Karen
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04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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Old 09-06-2010, 12:59 PM   #128
TSund
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Re: Joe passed on this evening

blessings to a truly wonderful angel. My sympathy to Christine and all of her family. Thank-you for sharing so much with all of us.
Terri
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Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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Old 09-07-2010, 05:21 PM   #129
mts
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Re: Joe passed on this evening

I have not logged on for quite a while and was just so saddened to hear of Joe's passing. I only spoke to him once about 4 years ago and he was most helpful to me. If not for this website I would never have had the kind of unbiased information provided to me nor the support.

I always have considered that cancer has a good side in that it allows us to reconcile, redirect, and reaffirm our lives in positive ways. I know Joe was already doing that way back when this website was created.

My warmest thoughts go to Christine and family. My eternal thanks to Joe. He was awesome!

Warmly,

Maria
__________________
--------------
Dx'd 8/04 at 41
Stage 1 for some onc's; Stage II for others (if you add up the sizes of all tumors).
Infiltrating DCIS
HER2+, ER+10% & PR-
.9cm tumor not visible on mammo, but palpable; visible on ultrasound
Lumpectomy/ clear margins, no nodes
Had Breast MRI after lumpectomy that revealed two more tumors in same quadrant(.4cm and 1.6cm) that were not visible on either mammo or ultrasound.
Re-excision
DD AC+T; Herceptin one year
Rads
NED/Taking Tamoxifen reluctantly
--------------
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Old 09-09-2010, 02:18 PM   #130
MCS
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Re: Joe passed on this evening

I have not checked in a quite a while. I am devastated and wrenched in sadness on Joe's passing. I think of him as one my own, which he really was to all of us.
I am so speechless since Christine, our sister, is now without her husband and her right arm and the girls without their father.
I pray for him; and peace for Christine, Danielle and Deborah, in their hearts and mind. He was truly a remarkable man and a "father" to all of us
Blessings
Maria Singer
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Old 09-13-2010, 09:44 AM   #131
tdonnelly
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Re: Joe passed on this evening

HER2 Family,

My deepest sympathies to Christine and her family regarding Joe's passing. His legacy will carry on with HER2Support.org. All of you are in my thoughts and prayers.

Tamara
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Tamara Donnelly
Invasive Ductal Carcinoma 10/2006 HER2+
Lumpectomy
Adriamycin x 4/Cytoxin x 4/Taxol x 4
Herceptin x 17
Radiation: 5 1/2 weeks
Second Reoccurrance: August 2010
Right Breast Masectomy
12 doses of Taxol
1 yr of Herceptin
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Old 09-21-2010, 07:23 AM   #132
Valerie in Michigan
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Re: Joe passed on this evening

Dear Danielle, Christine and Family,

We all knew what a guiding light and special person Joe was to all of us. I am shocked and deeply saddened to hear of his passing. Somehow words are are not enough to describe this man. His spirit which has touched each one of us whether we had met him or not will continue to live on in the survivors who will continue to push forward with his work. I will never forget Joe. My deepest heartfelt condolences go out to Christine and family.
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Old 09-21-2010, 08:51 AM   #133
Nguyen
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Re: Joe passed on this evening

I am so sorry to the family about this, though I am sure Joe is now at peace and happy whereever he is.

Nguyen
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Old 09-21-2010, 06:59 PM   #134
CoolBreeze
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Re: Joe passed on this evening

Wow, I'm more a lurker than anything and since replies to threadss come to me in email I don't always log in here. Even a newbie lurker like me knows who Joe was and how he helped the HER2/cancer community.

My deepest sympathies for your loss.
__________________
http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 09-22-2010, 08:50 PM   #135
Marily
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Re: Joe passed on this evening

Christine, Danielle and Family,
As the others on this site, I am thoroughly shocked at Joe's passing. I think in my mind he would always be here coordinating and completing the Her2 community. So many beautiful things have been shared here about both Joe and Christine's help.. My this was a tiny site when I first started coming here and I look today at the number of people viewing and it is amazing the lives you two have touched. Thank you and my deepest sympathies to you all.
Marily
11 year survivor
stage IV er+++ pr+++ her2+++
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Marily
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Old 10-16-2010, 04:15 PM   #136
KymAustralia
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Re: Joe passed on this evening

Like others - it has been ages since I logged in only to find this post. I am so incredibly sorry to read this - I am shocked beyond belief. Joe and Christine gave so much to so many of us.
Christine and Danielle my belated thoughts and prayers go to you and your family. God Bless Joe - he has earned a special place in heaven
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Dx Nov 2002 Her2 +++ Er+ 44 years of age (Pre menopausal)
Lumpectomy 1st Dec '02
Stage II 2cm tumor.. Clean margins
Her2 +++ Er pos
1 x Pos Node of 14
Entered BCIRG 006 Trial Jan '03
4 x AC 4 x Taxotere 30 Rads
1 year Herceptin
5 years Arimadex
Total hysterectomy (came out of chemopause) March '04
2012 - Still NED
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Old 10-18-2010, 11:35 AM   #137
mcgle
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Re: Joe passed on this evening

Like Kym above, I have not logged on for ages and was so sorry to read this sad news about Joe.

My condolences go to his loving family.

Mcgle (UK)
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Old 10-18-2010, 11:53 AM   #138
Kim in CA
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Re: Joe passed on this evening

Dearest Christine and Family,

I am so saddened to learn of Joe's passing. He will be sorely missed by everyone on this board. I send you and your daughters my deepest and most heartfelt sympathy.

With much love, Kim
__________________
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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Old 10-30-2010, 07:35 PM   #139
karenfritzohare
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Re: Joe passed on this evening

I am so sorry to read of Joe's passing. I have no words. Please know how much we all care and how deeply we appreciate his work on this board.
Prayers.
K
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Old 10-31-2010, 01:53 AM   #140
loveher
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Re: Joe passed on this evening

I am so sad to hear this. I hope that Joe's family members are well and are slowly, slowly healing. Though my mom has joined the other her2 angels, I still feel very attached to this board and check it from time to time. I am so thankful to Joe, as this board was sometimes all I had. I remember one time Joe sent me a personal email, I was really touched that he would take the time to compose an email when I'm sure he had many other things to attend to.
I think our time on earth is not defined by how long we live, I think it's what we do and who we touch.
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Hi i'm Sue. I've been part of the her2support family since 08'. My amazing mother Hong was her 2 stage IV 9 years and bravely earned her wings, I still love this board and continue to her fight. Plz reach out if you want to connect:)
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