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Old 08-13-2010, 01:12 AM   #1
Danielle
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Joe passed on this evening

Hi, everybody. My name's Danielle, and I'm Christine and Joe's daughter. I might have met some of you over the past few years at many of the events our group has attended. And those of you who I haven't met, I just want to let you know how proud my parents have always been to be among a network of such amazing, inspiring, and forever enduring fighters. They've talked about so many of you like you're dear, old friends -- many of you they haven't even properly met!!

I just wanted to let you know my dad passed on tonight. He'd been fighting his own battle with stage 3 lung cancer, diagnosed in January, and as his primary caregiver, I can say the past few months have definitely been a battle. My father was always such a delightful and motivated human being, as if that weren't so evident by this group, and just know there wasn't a month that passed where he ever lost his smile. (The last time my family was all together was my mom Chris's birthday on Wednesday the 4th. Dad made an amazing seafood linguine, and it was so nice to have an afternoon with me, my mom, dad, and sister all together. And just a few days ago, during a home nurse's visit, he stuck out his tongue and mooned me!) And just know our lovely little dog, Belle, is trying her very best to keep our spirits lifted through such a difficult time. And that he died peacefully here at home with my mom, his sweetheart of 27 beautiful years, by his side. There's no doubt he's an honorary HER2+ angel.

Much love to all of you,
Danielle
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Old 08-13-2010, 02:18 AM   #2
Ellie F
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Re: Joe passed on this evening

Danielle
I am so shocked and upset to read this post and I know everyone else on the board will be.
I had no idea that your dad was ill and fighting his own battle against this illness, but I suspect that would be the way he wanted it.
My sincere condolences are sent to your family at this very sad time. Your dad has left a legacy that will always be remembered. His work in our struggle against breast cancer will never be forgotten.Your parents have been an inspiration to so many in ways too numerous to mention.
I am sending prayers and comfort across the pond for our new honorary HER2+ angel and his wonderful family during this time of great loss.

Ellie
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Old 08-13-2010, 02:29 AM   #3
Chelee
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Re: Joe passed on this evening

Danielle, I couldn't sleep tonight so decided to check in on the board and my heart just sank when I saw your post. It's through tears that I write this. I am just taken back and in total shock...I had no idea Joe was fighting lung cancer. I just hate this damned disease...I lost my mother to advanced lung cancer 3 yrs ago so I know how difficult this had to be on you, Christine and the family. Your Dad put so much into this board for all of us...I don't know what I would of done without this board. Your father was an amazing man and loved by all of us. My heart is breaking and I can't stop the tears.

I just can't even begin to tell you how truly sorry I am. Joe always made us feel like part of the family...oh how I'll miss his posts. I never got the privilege to meet your dad in person--but he had such a big presents on this board I feel as though I knew him. I'd always hoped I would get a chance to meet him and Christine at one of the ASCO conference or other events. He was always there to help anyone that needed it. He has jumped in and helped me several times when I really needed it. He had his serious side and we also saw what a great sense of humor he had. I will keep you all in my thoughts and prayers at such a difficult time. My sincerest condolences to you, Christine and family. (Joe you will be missed!)

My Sincerest Sympathies.

Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 08-13-2010, 03:11 AM   #4
tricia keegan
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Re: Joe passed on this evening

Danielle,

I'm in such shock and had no idea your Dad was ill, when I saw your subject line I had hoped this referred to something else.

My tears are falling as I write this, I had never met your Dad or anyone on this site, but know in my heart a dear friend is no longer with us. I'm so very sorry, please give your Mom a ((((hugs)))) from me, and please know your dad made such an impact on so many lives across the world.

My very deepest condolences to you and all your family. xx
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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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Old 08-13-2010, 03:18 AM   #5
michka
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Post Re: Joe passed on this evening

Danielle. I also am so shocked and I am crying. Joe brought hope and strength to our HER2 community. He did so much for us. He defined himself as a "proud webmaster" but we were the ones to be honored to have such a guide. You can be proud of your father. We did not know what you and the family were going through. My thoughts are now with you and our dear Christine. Joe is our Chief Angel.
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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Old 08-13-2010, 04:21 AM   #6
Pam P
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Re: Joe passed on this evening

Danielle - I'm just stunned and numb at reading this news. I had no idea Joe was ill even. He has been such an amazing advocate, support, kind and gracious and giving to all of us with this work on this site and fighting for better cancer treatments. And from your post it sounds like he was an amazing spirited funny and loving dad and husband. My deepest sympathy to you and to Christine and the rest of the family. Pam
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6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 08-13-2010, 04:35 AM   #7
whatz
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Re: Joe passed on this evening

Danielle,
I can only echo what everybody else has already put so eloquently in words. I've only been a member on this board for a short time but your dad has created a great legacy, helping countless people. I think he can look down from heaven and say "yes, I've run my race well". My deepest condolences for your loss. May god comfort your hearts.
__________________
4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
PET Body 2/11 clear
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Old 08-13-2010, 05:01 AM   #8
Sheila
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Re: Joe passed on this evening

Christine, Deborah and Danielle
I am so sorry to read this news....I just spoke to your Dad last week on the phone, I knew he was fighting the lung cancer, we spoke of how he had just gotten out of the hospital with pneumonia..he was so positive...not ever IF I beat this but when....his voice was raspy from the radiation, but he was enduring all the things most of us have endured like a trooper....and not wanting to share this with the group...not wanting to add his own burdens to ours...I think there were only a handful of us that he told, and he did not want everyone to know, so as not to disrupt the Her2 Community.

You Dad/Husband is a hero to all of us....and yes he is a Her2 angel, the leader of the Her2 angels....his presence and love for all of us will be sorely missed.

RIP Joe, you have earned peace after helping so many...tears will be shed everywhere for you today.
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__________________
"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

Last edited by Sheila; 08-13-2010 at 05:45 AM..
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Old 08-13-2010, 06:03 AM   #9
kcherub
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Re: Joe passed on this evening

Danielle,

I just don't know what to say...I am in total and utter shock. Your Dad was such a wonderful, caring and kind man. I can actually see why he would not have let us know what he was going through himself--just another selfless act on his part.

My heart breaks for you, for your Mom, for all of us and for all of the women who come here in the future who will never know what a great person he was.

Big hugs and much love,
Krista
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Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 08-13-2010, 06:18 AM   #10
Kimberly Lewis
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Re: Joe passed on this evening

So sad to hear this! Thanks for your post Danielle. Your family is in our prayers of course. This website was a lifeline to me when I needed it most. I understand his keeping it to himself. He and your mom are so very precious to so many...
Celebrating a life of compassion - here's to Joe!
__________________
Kim

Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes

BRCA 2
positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara


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Old 08-13-2010, 06:26 AM   #11
jhandley
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Re: Joe passed on this evening

Hi Danielle
He was a true gentleman and we will miss him dreadfully. He was such a rock for us all even all the way "down under". Did he have any words for us? You know tears will be shed for him all over the world. Praying for you all.

Jackie (down under)
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Old 08-13-2010, 06:29 AM   #12
Carolyns
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Re: Joe passed on this evening

This is such a shock to read. Peace to you and your family during these most difficult times.

Love, Hope, Peace, Carolyn
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Old 08-13-2010, 06:49 AM   #13
DanaRT
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Re: Joe passed on this evening

Stunned and sad. A hero to so many.

Love,
Dana
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-Dana-

]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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Old 08-13-2010, 07:06 AM   #14
Hopeful
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Re: Joe passed on this evening

Danielle and Christine,

Like almost everyone else here, I had no idea that Joe was ill, and am shocked and saddened by this news. His gift and his legacy to us of this community will ensure that he is never forgotten by those of us affected by this disease. I wish I had words to tell you how sorry I am that he was taken from us so soon. I hope you will find peace in knowing how loved he is by so many of us that he touched and never met. You are all in my thoughts.

Hopeful
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Old 08-13-2010, 07:07 AM   #15
kimber
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Re: Joe passed on this evening

I feel so very sad. . .. Thanks to your father (and husband) that I found this site. It helped me more than you could ever know. It still does.

He was a God send. I type with tears for a man that I had never met but feel like I have known for years. . . .

My love to you all.

Kim
__________________
dx 5-05 @42 years old
IDC stage IIA
ER+ (100%) ER+ (75%) HER2+
double mastectomy
4DD AC - 16 weekly Taxol
6 months Herceptin - stopped due to MUGA
35 chest wall rads
Tamoxifen
Lat flap with silicone implant reconstruction on left side due to radiation. "Normal" silicone on right. Finished all reconstruction 6-07!!!
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Old 08-13-2010, 07:27 AM   #16
PinkGirl
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Re: Joe passed on this evening

This is such sad news. My sympathy to Christine, Danielle, Deborah
and Belle. Joe will be missed and remembered.
__________________
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Old 08-13-2010, 07:53 AM   #17
TanyaRD
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Re: Joe passed on this evening

Christine, Danielle, Deborah,
I am so sorry to hear this terrible news. I had the opportunity to speak with Joe about 2 months ago and could hear that he was quite ill but remained full of a positive spirit. He continued to speak only of the multitude of future plans he had for this group. I hung up from the call truly inspired by his attitude. My thoughts and prayers are with each of you during this difficult time.
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Old 08-13-2010, 07:55 AM   #18
Gerri
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Re: Joe passed on this evening

"If you can't imitate him, don't copy him." - Yogi Berra

There will never be another Joe; he reached out and touched the lives of people all around the world. I am so sad to think that he is gone, but he will live on through his life's work - our community of friends.

Rest in Peace Joe. You will be missed.
__________________
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
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Old 08-13-2010, 07:56 AM   #19
adelay
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Re: Joe passed on this evening

My prayers are with you, may the Lord bless all of you.
__________________
~Anna

DX April 2009 age 40
IDC Triple Positive
7 of 14 nodes positive
Lumpectomy May 2009
Port May 2009
AC done in Sept 2009
T done Dec. 2009
Herceptin (should finish Oct. 2010)
Mastectomy January 2010
Radiaition x 33 done April 2010
Tamoxafin for five years
Herceptin done!
Still clear May 2011
3 years out May 2012, all good!
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Old 08-13-2010, 08:05 AM   #20
Montana
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Re: Joe passed on this evening

Danielle,

I'm saddened to hear the news about your father. My deepest sympathies to you and your sister and your mom.
__________________
Diag. Oct. 2004 age 54 left breast
Stage 1 grade 3; 6mm IDC; unknown amount of DCIS
with comedo necrosis; node neg.
Nottingham Grade 7/9
ER 91% PR 62%; Her2 3.6 by ICH; KI-67 35%

Nov 2004 Lumpectomy; SNB failed so had
full axillary clearance;
Dec 2004 2nd lumpy for clean DCIS margins.

Jan/Feb 2005 4 A/C dose dense;
33 rads finished 6/2005;
Began 5 years Arimidex in 6/2005
No Herceptin
9/2007 Quit Arimidex due to severe side effects.
NED
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