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10-09-2007, 01:50 PM
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#1
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Senior Member
Join Date: Jan 2007
Posts: 368
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Herceptin seminar
I signed up for a Genentech sponsored seminar to be held in St. Louis, MO. at the end of this month.
Now I have to talk hubby into taking me. Lol
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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10-09-2007, 06:14 PM
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#2
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Brenda,
I to have signed up for a seminar by Genentech in N. IL. It is Oct 24, in Elk Grove, Village near Chicago.
Eager to see what it is all about and learn.
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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10-09-2007, 06:46 PM
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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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Donna
I signed up for that too...see, we will get together and not at chemo this time!!!!!
__________________
"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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10-09-2007, 07:03 PM
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#4
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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More please
Someone tell us more.
Is there a web site with a listing of locations?
Or did you find out at your cancer clinic?
I go in tomorrow and will nose around for anything posted about such a seminar.
__________________
"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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10-09-2007, 07:43 PM
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#5
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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I think the website was listed here. It is Herceptin.com
From there go to Her Story Program and you can sign up on line. A few days after I signed up I got a bag from them. A nice surprise. I got a postcard in the mail telling of the seminar.
Sheila it will be nice to see you outside the treatment room! Wonder if anyone else will be going from the surrounding area we know.
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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10-10-2007, 03:51 AM
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#6
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Senior Member
Join Date: Jan 2007
Posts: 368
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http://www.herceptin.com/herceptin/p...rstory/map.jsp
Just click on the state.
I got a postcard, and it says the seminars are free.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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10-10-2007, 04:44 AM
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#7
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Thanks ladies -
Looks like they are starting the HerStory program back east and midwest. Nothing in the Rockies or west yet.
Have to check back in a couple of months and see where else is listed.
__________________
"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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10-10-2007, 02:16 PM
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#8
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Senior Member
Join Date: Oct 2005
Location: Alexandria, VA
Posts: 197
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I am going to the one in Arlington, VA this Sat. 10/13
Hi, folks,
Yes, I registered for the one this weekend at the KeyBridge Marriot off of RT 29 in Arlington...looking forward to it...
Gina
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10-10-2007, 03:22 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Just click on the state.....
Ah yes, there it is, the map of the USA that Alaskans and Hawaiians know oh so well... They even have a side note for those who are not "residents of the USA"....
Could someone who attends the seminars provide Genentech with a map that includes Hawaii and Alaska, just in case they think we are still territories?
From the largest state in the Union,
ALASKA Angel
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10-10-2007, 03:39 PM
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#10
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Alaska Angel
That does really bite to be treated like an outsider...I will let them know when I go here in Illinois!!!!
__________________
"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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10-10-2007, 04:25 PM
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#11
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Senior Member
Join Date: Jan 2007
Posts: 368
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Yeah, I kind of know the feeling. I quit looking for events for most BC things in IL, since they seem to think the only city in IL is Chicago. Lol
But at least I'm close to St. Louis,MO.
Really, maybe they just don't have enough participants in those 2 states, and you can speak up and BE the one that shares the story?
When I first found out I had BC, I asked about a local support group. There's no such thing. I would have to go 50 miles away, when I was barely making it the few blocks to chemo every 3 weeks.
Later I asked the local cancer association about a support group and they told me there's no interest in one.
Darned shame, I think.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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10-10-2007, 04:52 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Educating Rita
Thanks, Sheila and Brenda,
With a population of 260,000 in Anchorage alone according to the 2000 census, if Genentech doesn't think there are enough participants in Alaska to put us on the map maybe they need to check their marketing strategies?
There are times these days when perhaps being a citizen of the USA has a tarnished quality to it, but for now we are part of the whole, working toward better days.
AlaskaAngel
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10-10-2007, 07:22 PM
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#13
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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I'm going to see if I can go to the seminar on the 24th in Chicago. My doc apps are Monday the 22nd - and as long as I don't have a "procedure" going on that day I hope to go and meet some of the people from this site. Thanks for the info
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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