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05-27-2013, 03:54 PM
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#1
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Senior Member
Join Date: Jul 2011
Location: ottawa canada
Posts: 367
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Re: Rembering our amazing Christine ~ web site founder
StephN, You are an angel to post these pictures and say these words.
A righteous tribute to the best of the best.
The world is so much better because Christine was here.
As a side note, a smile is across my lips as I read your own heroic story in your signature details with your battle. Denise......are you reading this? Steph's signature details will be yours a decade from now when you are NED everywhere....
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011
mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.
I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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05-28-2013, 01:45 AM
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#2
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Re: Rembering our amazing Christine ~ web site founder
I've never met Christine and Joe personally. But I feel I know them very well from everything I've read on the Her2support site.
Through pictures and reports, they had taken all of us to all the ASCO meetings and met all the wonderful doctors/specialists of the breast cancer field - especially Her2 breast cancer.
I was surprised/delighted to have received a beautiful memento and a card from Christine after making a small donation. That was so unexpected! Re-reading the hand-written cards and admiring the small angel and a Precious Moment figurine box, I can't help but appreciate their thoughtfulness.
Debra and Danille's names were next to Christine's on the note I received after Joe's passing. And now the two young women are carrying the torch! What better way to honer their parents/two very beautiful souls!
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Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 05-28-2013 at 01:57 AM..
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05-28-2013, 05:41 PM
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#3
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Rembering our amazing Christine ~ web site founder
Christine was Amazing - and so kind, truly a caring lady.
It is a sad day for us.
I will never forget I had heard about Christine (I was not yet a member on the site.) I reached out and called her at home. I was newly dx. & Christine was the very first one to encourage me to fight for herceptin. Not to take no for an answer.
As many of you know Christine had lived in New Jersey prior to moving to Ca. She insisted I contact her dr. who may be able to help me.
Christine made a strong first impression for me. She had plenty of conviction to fight this disease. Always confident and positive. For a newly dx. person it was wonderful to receive her encouragement.
Joe & Christine made a miracle occur with this site.
They left a special legacy. God Bless them.
Jean
I
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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05-28-2013, 07:27 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Re: Rembering our amazing Christine ~ web site founder
Thank you StephN for starting this thread.
I was warmly embraced by Christine's enthusiasm when I attended an ASCO meeting in Atlanta with Christine, Joe...I remember that Becky was there too. We handed out the stress relieving brains and Christine had us reach out to all the doctors passing by to remind them of the need to scan for brain mets.
Christine and Joe were warm and welcoming to this relatively newly diagnosed Her2 gal with mets. I felt empowered after hearing Christine's amazing story. I felt even more empowered hearing the results of research that year.
I later had the joy of meeting Christine and Joe for dinner at a restaurant by the sea near Carlsbad. We had a few glasses of wine and lots of laughs. Who could even think of "mets" on a beautiful breezy warm night by the sea? We talked about life, and our love for our children. Oh how she loved her girls.
Yes, we are all more empowered and see the possibilities in the impossible thanks to Christine. How privileged I feel to be able to keep passing it forward.
Love Kim (from CT)
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2001 - Stage 0, lumpectomy, radiation, tamoxifen
2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.
2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle
2011 - Still Herceptin only and NED
2011, June - STOPPED Herceptin and kicked up my heels!
2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.
2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine
2022 On Herceptin and NED continues - WOOT WOOT!
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05-28-2013, 10:34 PM
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#5
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Rembering our amazing Christine ~ web site founder
Joe sent me an article about Christine from Vision Magazine in 2004. I did not find it, but found a link to a very complete article with Christine's story on another breast cancer website.
http://www.youngsurvival.org/breast-...iagnosed-at-40
It is well worth the time to take a look. and tells of the family move from New Jersey to San Diego area. An internet search will bring up several other mentions of Christine.
A sad point in the above story concerns Christine's promise to her dying mother that she would live to 75 and beyond. Christine mentioned this more than once and I am sorry she had to break that promise, but I am sure her mother understands and greeted her with wide open arms.
__________________
"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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