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11-22-2007, 04:52 AM
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#1
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Senior Member
Join Date: Sep 2005
Posts: 414
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I hope you have a nice Thanksgiving Day
Dear Joe and Christine,
I am sorry to hear that some people have been disrespectful.
Recently I received a mailing from a cancer charity I support in the UK and was shocked to learn how much it was costing them an hour to keep their website up. I had never really thought before about how much a website like this one costs to run. It made me really appreciate all that you do.
I guess the thing that I think is so great about this website is that it is run by people who have been directly affected by cancer. Charity professionals are great, but sometime they don't always understand where we are coming from. Also, that this website does so much to help defeat this type of breast cancer by publicising trials and new developments.
I hope that you have a great day with your family.
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11-22-2007, 05:10 AM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Thanks wholeheartedly to Joe & Christine
I think I know which thread Joe deleted. I replied to it before the comments fired up. Have not been able to follow the last couple of days, but it WAS getting beyond "polite discussion."
The empathy and civility of the members here has always been one of this site's hallmarks, and I am glad to see that we do not NEED monitoring as a matter of course. The fact that Joe can feel at liberty to go about his business and trust that what is taking place here is non-threatening to anyone, yet honest, is a testament to the members.
We all come from different places and backgrounds to arrive here at a commonality with a terrible disease. Naturally we all have opinions on most everything, and our own ultimate truths, which may or may not be open to change. The only change we should be thumping for is a CURE!
__________________
"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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11-22-2007, 05:57 AM
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#3
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Joe and Christine
I have been a member of this group for over 4 years, and I have seen differences in opinions, ideas etc. It is OK to have our opinions, we are all unique, as is our breast cancer...what works for one, won't work for another...one is taken and yet another lives on....but in all of this, we must never forget the reason this board was started by Joe and Christine...to help each other....with respect, knowledge and genuine compassion. This board has been a lifeline to me, don't know where I'd be without it.
Thank you Joe and Christine ...you are a lifeline
__________________
"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
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11-22-2007, 02:10 PM
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#4
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Thank you Joe and christine, I don't post as often because of the remarks that are at times so very hurtful. And my husband suggested I drop out of this site because of it, but I have always been a believer in the goodness of all. Thank you for your concern and for taking a step toward ending the bitterness. Much love, Vickie
__________________
Love and Hugs, Vickie
Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.
Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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11-22-2007, 03:19 PM
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#5
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Senior Member
Join Date: Aug 2006
Location: Poland Ohio just a little south of Youngstown.
Posts: 473
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Joe and Christine, I'm so sorry for whatever happened, like most of the others, I'm glad I missed it. I wish that I could put into words what this site has done for me, I would be lost without it. I occasionally visit other boards but this is the Her2 site, there's nothing out there like it. I've learned so much and have been hugged and helped by so many. I pray that whatever happened will be the end of the nasty times. We all love you so much!
Hugs
__________________
Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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