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Old 03-30-2013, 10:18 PM   #1
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: Honoring Our HER2 Lost

The way things are right now with this web site, we do not have an official administrator who can make any changes such as when Joe was alive. We react to major problems to keep the site clean and running as well as possible. But at this time there is no revamp in sight. Sorry, if some of you feel that this type of responsiveness is lacking (I join with you), but until Christine and Joe's daughters wish to move ahead with some substantive changes here, we must live with what we have.

So, NO one is being forgotten or purposely dropped off the cancer map. This is the way Joe left the site. God rest his soul.
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"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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Old 03-31-2013, 05:52 AM   #2
Jackie07
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Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
Re: Honoring Our HER2 Lost

I've just found out that my social security number and all other personal information have been compromised and someone had filed my income tax return for the 2011 year. When I called the IRS last year after encountering problems doing on-line filing, the agent who took my call evidently had thought I was the bad guy and brushed me off. Finally I got it clarified a couple of days ago and now I have to do all sorts of paper work to get myself 'moved' from 'Maryland' and become a 'married couple' again!

Just imagine if I'd used my 'real' name on my Facebook and other online forums! The information was 'phished' from me at home because I'd thought the caller was from a legitimate source that I'd just contacted that day. My computer was also compromised one time because the 'technician' had installed a virus - I realized it when the 'phisher' called right after that mechanism 'flashed' on my computer. There goes my 'innocence' ...

So please be very careful as to putting personal information in an open forum. We've got visitors who do not fit the Her2 profile and there's no way to find out who they really are!
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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; 03-31-2013 at 05:55 AM..
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