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12-06-2010, 01:52 PM
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#1
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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San Antonio
Does anyone know if any of our sisters from this site will be attending the conferences this week? Is anyone going to post us some of the information?
Amelia
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12-06-2010, 02:19 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: San Antonio
Amelia
StephN, Sassy,Laurel, Huchibuk (Brenda), Joan M, Paty, Chrisy, Sheila and Christine are all going. Sadly, I cannot attend this year. You know they will keep us informed.
Also, many of the news is posted so it can be found by "us" (those left behind) and we can put it on the site. I promise I will be posting the latest and greatest.
Stay tuned!!
__________________
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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12-06-2010, 06:34 PM
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#3
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Re: San Antonio
So glad we have them going.Her2support is awesome and we are key to winning this fight. Look forward to the news.
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!
1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."
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12-06-2010, 08:04 PM
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#4
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: San Antonio
Me too !! I am looking forward to news from our members who are going to San Antonio. One of the doctors from the medical group to use went to San Antonio. You met I am going to question him the next time I see him.
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12-06-2010, 08:37 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: San Antonio
Thanks for asking, Amelia -
The group mentioned in Becky's post will be gathering at our hotel by mid-afternoon tomorrow, Dec.7. We will set up the booth on Wed morning and start attending the presentations that day.
We have presentations and receptions every evening. Joe used to be good at ferreting out snippets of info important to our group. We will miss that!
More to report very soon.
__________________
"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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12-06-2010, 09:53 PM
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#6
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Senior Member
Join Date: Oct 2010
Posts: 92
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Re: San Antonio
How do you find out about these conferences?
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12-07-2010, 04:25 AM
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#7
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: San Antonio
Thanks to all going on our behalf. We look forward to hearing about the advances being made in our quest to vanquish this foe!!
I know Joe will be sadly missed this year but I have a sense that he will be there watching over you all.
Take care all
Ellie
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12-07-2010, 07:37 AM
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#8
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: San Antonio
Since I'm pretty new--who was Joe? And like Mel3 asked, how do we find out when these conferences are and in what manner does a group like this participate?
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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12-07-2010, 01:37 PM
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#9
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: San Antonio
Yeah. I know all of you are going to miss Joe. I am excited about this meeting. Hopefully, we will have some new treatments.
Amelia
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12-07-2010, 03:14 PM
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#10
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: San Antonio
Karen & Mel,
I was asked to attend this conference last year by Joe, who was the moderator of the site until his unexpected death in August. Joe and Christine Druther founded Her2Support years ago. Christine is a 20 yr survivor of Her2 B.C. Joe was a wonderful man whom we all respected and miss terribly as he was brilliant, fair, and compassionate.
This is one of the largest conferences on Breast Cancer in the world. Leading researches come to present their newest findings and to share information. All the big player drug companies are here as well. Her2Support has a booth in the vendor area. Those who attend help out manning the booth and slip into the symposiums that interest them most. There are many interesting topics to be presented in the next few days. I will find out from others more verse than I how one goes about attending SABCS.
Now for some girl talk! I meet Sassy (Rhonda) in the airport in Charlotte and we flew to San Antonio together from there. She's great! Smart, down to earth, and very easy to be with. A little bit ago I met Sheila, who has been through so much lately I could not believe she would actually make it, but there she was looking fab in a black outfit and newly dyed hair. She is a lovely woman both physically and inwardly. Then onto Pati, who has a smile to light up the whole lobby! Also, Joan M. is here, too. Rhonda and I did not recognize her because she has gone blond (you heard it here, straight off the press!). She's rockin' that look really well, too!
I am waiting to meet Steph, Brenda, Christine, and Chrissy (think I'm forgetting someone...dratted chemo-brain). Your cub reporter will be back with all the juiciest bits of info. on the conference and its attendees as time permits. Until then please know I wish I could meet all of you to laugh in the face of this terrible disease.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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12-07-2010, 04:20 PM
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#11
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: San Antonio
Laurel,
Now that both you and Becky has let us all know who's there this yr...we will be expecting DETAILED reports on the spot. lol  You can all take turns rotating outside to a computer and filling us in as you go. HA! Sounds like a good group there to represent the Her2 forum and bring back any and all exciting news. I know you will all be soaking up alot of information...but don't forget to throw in a little fun inbetween it all! (I know you all will.)
I'm jealous...I would of loved to be there. Maybe it's not to late...gotta run...need to catch a plane. 
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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