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08-13-2010, 08:11 AM
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#21
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Senior Member
Join Date: Aug 2006
Posts: 492
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Re: Joe passed on this evening
I am so very sorry for your loss and for everyone here. Joe's love for Christine and the other women of her2+ bc was so very evident. RIP Joe
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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08-13-2010, 08:44 AM
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#22
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Joe passed on this evening
I also spoke with Joe last weekend and had no clue that this turn of events would take place. He was positive and in excellent spirits. He seemed to have put his setbacks behind him. I have know since the beginning of the year that Joe had been diagnosed with lung cancer. He did not want to burden the group with his problems. He was like that, thinking of his family and his Her2 family before himself.
He was always there behind the scenes. He is one of a kind and his loss will be evident to all those who were touched by him. I am truly at a loss for words.
All my love to Danielle, Debra and Christine
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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08-13-2010, 09:54 AM
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#23
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Senior Member
Join Date: Feb 2010
Location: TN
Posts: 175
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Re: Joe passed on this evening
Dear Danielle,
Although I am new to this group, and being a male with this disease perhaps the oddball too, Joe welcomed me and answered my every question as if I was somebody important and worth the effort. He made feel like I was part of this family too. I am saddened to have lost his support and encouragement. But the loss I and the others in this group feel because of Joe's passing is so small compared to what you, your sister and mother are feeling today. Please know that my heart goes out to you all.
Phil (bird)
__________________
Male Breast Cancer, DX 5/15/09, IDC, STAGE 1, 1.7 cm, HER2+++, ER+(95%)/PR+(75%), Ki67 40%, grade 3, 0/5 nodes, TX: mastectomy, TCH finished 7/19/10, radiation 6 wks., Tamoxifen on going, bisphosphonate 24 mos.
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08-13-2010, 10:18 AM
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#24
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Joe passed on this evening
I am so shocked and saddened by Joe's Passing. I had no idea he was that sick. I thought of him all week. He posted something about the doctor not wanting him to travel on Christine's birthday post after he wrote about what they had to eat for her birthday. He promised to write over the weekend and let us know what was going on with his health, but he never had the chance.
Sympathies and big hugs to Christine and their family.
Joe, one of our fearless leaders will be greatly missed, but his spirit will always be with us and this site.
He has always been loved by us and many others.
Last edited by ElaineM; 08-13-2010 at 10:19 AM..
Reason: addition
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08-13-2010, 10:41 AM
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#25
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Re: Joe passed on this evening
I don't believe it...this isn't fair...
I hate this horrible disease, he always kept an eye for us, while he was sick with this own..
My toughts and prayers are with Christine and the girls.
Love,
Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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08-13-2010, 10:48 AM
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#26
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Joe passed on this evening
Danielle - Thank you for your bravery in posting your father's passing. I know how hard that is having my father pass away over 2 years ago - it still hurts.
Joe had informed me as well of his illness. He did not seem too well last December at the San Antonio conference and I was keeping tabs on him a little. He called me about 8-9 days ago when he came home from a short hospital stay.
He had plans and was going to call me back with further info. Which now I wish I had followed up instead of waiting - but on the other hand - maybe he took a quick turn for the worse and it would not have been a good idea to call. We never know.
His upbeat attitude seemed to mask what was happening. He talked about getting in to a vaccine trial for lung cancer.
My first thought was for Christine. Joe has been such a faithful and loving husband for so many years. Chris is a realist and knows that cancers can have their own way, but this is such a terrible, cruel , ironic blow.
Chris - you and your girls have a whole extended family out here in the wide world who send their love and condolances.
As Joe told me recently: "The site is pretty well running itself, and, as I have had to step back, I am proud of the way the members are behaving and helping one another." The attitude and pride filtered through this forum from the top!
__________________
"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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08-13-2010, 10:48 AM
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#27
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Joe passed on this evening
The legacy Joe left is a considerable one. He touched many lives, and maybe even saved a few, by maintaining this site with such love and devotion.
My condolences to his family. Thank you for sharing him with us.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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08-13-2010, 10:52 AM
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#28
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: Joe passed on this evening
I am just flat out heartbroken and numb. I had no idea Joe had been sick. Oh my heart hurts... Danielle and Christine, my love and prayers are with you. I don't know if this will ever really sink in. Angel Joe. We love you and will miss you beyond words.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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08-13-2010, 11:31 AM
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#29
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: Joe passed on this evening
I am shocked, stunned and like many others I had no idea that Joe was ill. The "proud webmaster" has touched all of us. I had to read the news twice and then cry. I always hoped that Joe and Christine would come to France and visit and that perhaps I could show them a good time to try to show them how very, very much I have appreciated what they created, how amazing it is and how very, very much it has helped me. I am so sorry. I now have lost 3 good friends to lung cancer this year.
My heart goes out to Christine, Danielle, her sister and Joe's family and friends.
I am sorry I never had the opportunity to meet this exceptional man but I will never forget him.
Please accept my deepest sympathy and love.
Sarah
__________________
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08-13-2010, 11:36 AM
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#30
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Senior Member
Join Date: Jun 2007
Posts: 216
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Re: Joe passed on this evening
Dear Danielle,
Absolutely devastated for
Danielle
I just do not know what to say.
What a wonderful dad you had and a wonderful mum you have.
Thinking of you all.
Janie
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08-13-2010, 11:50 AM
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#31
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Senior Member
Join Date: Mar 2007
Posts: 33
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Re: Joe passed on this evening
I am in shock as I read your post. I can't believe it. I am so sorry for you loss. He was a wonderful man and helped us all immensely. Without your mom and dad devoting their time to this site to all of us HER 2 people, I don't know how I would have made it through.
May the Lord be with you and your family and comfort you during this time. My thoughts and prayers are with you.
Ruth Ann
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08-13-2010, 12:04 PM
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#32
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Re: Joe passed on this evening
Like all of us here I am absolutely devastated by the news of Joe's passing so suddenly. How like him to keep all his own struggles to himself! This website is a priceless gift he gave to all of us and there aren't words enough to express what it has meant to us. I know it brought him joy too and I hope all of you know how grateful we are and how much we also feel the loss of this very special man who was your husband and father --and, we feel, our friend and advocate. Please accept our heartfelt condolences and love and know that many, many prayers are being sent your way. Thank you so much, Danielle, for taking time in your own grief to let us know. God bless you all! Tricia
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08-13-2010, 12:05 PM
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#33
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Re: Joe passed on this evening
I am so sad. I remember Joe when he and Christine visited New Jersey a few years ago. A small group of us on the Board got together at a wonderful Italian restaurant. Joe sat back and looked a little stunned while the women Her2 survivors talked, talked, then talked some more. I felt a little guilty afterward, because he didn't get much chance to say anything. I had no idea he was fighting his own battle with this rotten disease. God Bless Joe, Christine and their family.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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08-13-2010, 12:34 PM
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#34
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Joe passed on this evening
This makes me so sad. I don't really know what to say about this. My condolences to the family.
Amelia
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08-13-2010, 12:42 PM
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#35
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Senior Member
Join Date: Jan 2010
Posts: 170
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Re: Joe passed on this evening
I am just shocked. I had no idea Joe was ill and am so very sad at his passing. I hope he knew how much he gave us by being there for us and providing us with this constant channel for sharing with each other.
Please accept my deepest condolansces and may peace be with you and yours.
Emelie
__________________
Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
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08-13-2010, 01:03 PM
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#36
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: Joe passed on this evening
I am so very sorry for your loss. My thoughts and prayers are with you.
Barb A.
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08-13-2010, 01:55 PM
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#37
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Re: Joe passed on this evening
I am so very sorry to read this. He was such a fantastic person and devoted himself to our cause. He will be greatly missed. He was such a special man.
Hugs ~ Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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08-13-2010, 01:57 PM
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#38
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Senior Member
Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
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Re: Joe passed on this evening
Joe truly left a legacy that his family can forever be proud of. He and Christine have touched so many lives and brought hope to so many. I hope this gives you some comfort in you time of loss. My prayers are with you.
Sandra
__________________
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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08-13-2010, 02:23 PM
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#39
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Joe passed on this evening
I am shocked, stunned and saddened by this horrible news of dear Joe's passing.
I, along with most everyone else on this board, it seems, had no idea that Joe was ill. How brave of him to keep it to himself...
My prayers go out to Christine and the entire family.
(:
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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08-13-2010, 03:03 PM
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#40
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Senior Member
Join Date: Sep 2005
Posts: 556
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Re: Joe passed on this evening
I am so sad to hear about Joe. I am really depressed and feel pain in my heart. He was such a wonderful person, we didn't know that he had been going through all this pain.
I am so sorry and my condolences to Christine and the rest of your family.
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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